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?"
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?"
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?"
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?"
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?"
31 October 2012
Halloween's Ableism Problem: The Commercialization of Disability Oppression and Mental Health Stigma
Trigger Warning: Direct quotes of ableist hate speech.
I asked the students to raise their hands if they had read news coverage of a shooting incident, mass murder, or other violent crime during which a reputable journalistic publication used language like "psychopathic," "insane," "mentally ill," or other derogatory descriptions referring to mental health and psychiatric disabilities as a way of discussing the perpetrator's known or suspected neurology. Most, if not all, hands shot into the air.
The common practice of conflating violence--or indeed, any other ill in society or personal flaw of an individual--with mental health and psychiatric disabilities occurs not only in the popular and news media but in everyday conversations. This myth is perpetuated by TV shows that depict rapists, murderers, and terrorists as "mentally ill," and by supposedly objective and unbiased news reports that use the same dehumanizing language to construct horrifying and appalling visions of what mental health and psychiatric disabilities look like. The rhetorical and discursive constructions of mental health would leave the average individual convinced that anyone with a mental health or psychiatric disability is a raging monster incapable of normal emotions or empathizing with others, ready at any trigger to spring vicious, murderous violence upon anyone unfortunate enough to be in their way or say the wrong thing at the wrong time. These people, we are told, are menaces to society and ought to be locked away in secure facilities for their own good and for the good of everyone else.
And always, they are others. The process of othering is not new to disability, whether in general or around mental health and psychiatric disabilities in particular. Given that the ability to empathize with other human beings--the ability to understand another's emotions not only intellectually but emotionally--is frequently upheld as an innate characteristic of humanity that separates us from less sapient creatures, the message that certain groups of disabled people inherently lack empathy underscores the deeply troubling trend of dehumanizing those people. Whether it's the Autistic like me or those with mental health and psychiatric disabilities, the stigma we face is staggering. Unlike those believed to be non-disabled, we are forced to prove our humanity, to prove our worthiness to be included as having equal value and worth as everyone else. Because we are other, it is possible for the mainstay of society to make light of our marginalization. And, as you may well know or have suspected yourself, the commercial exploitation of disability enfreakment is a lucrative business.
Fright at the Museum: Dead Men Walking is this year's haunted house experience at the Museum of Crime and Punishment here in Washington, DC. I heard about the haunted house experience when reading a list of Halloween-themed activities in the District. The language used on the brief advertisement described the haunted house as "featuring the criminally insane." Appalled at the blatant ableism, I searched for the attraction on the internet and found this language on the official website--"This Halloween the Crime Museum will transform into a hunting ground for the criminally insane." Yet despite my horror and disappointment, I was not surprised.
Every year at Halloween, haunted house attractions pop up across the United States, in people's basements, in stores, in hotels, in museums, in frat houses, in amusement parks, and just about anywhere else one can imagine decorating with skeletons and spiderwebs and coffins and fake corpses with fake blood and weapons nearby. I don't have a problem with that. What I do have a problem with is the commonplace use of "the insane" or "the criminally insane" as features in these attractions. Firstly, it's dehumanizing of actual people with mental health and psychiatric disabilities. Secondly, it's usually grossly inaccurate. Thirdly, it contributes to the already massive stigma against people with mental health and psychiatric disabilities in potentially extremely dangerous and harmful ways.
The attitude that leads otherwise decent people to believe that there is nothing wrong or problematic with featuring "the criminally insane" in a haunted house attraction is one deeply rooted in and perpetuated by an ableism so pervasive in society that it even taints disability rights movements. Ableism against those with mental health and psychiatric disabilities is not only widespread in society writ large, but it is a particularly vile and virile thorn embedded deeply into the disability community in general, including the autism and Autistic communities. This ableism gives rise to the attitude that sees those with mental health and psychiatric disabilities as legitimate material for twisted humor, freak exhibits, and fright experiences. (After all, if it is legitimate to fear an entire group of people based on dangerously misconceived prejudices against them, then it makes sense that that group of people would be used in a fright experience like a haunted house.)
Let's deconstruct this. To use actors or exhibits portraying people belonging to a marginalized group--in this case, people with mental health and psychiatric disabilities--as a form of entertainment is not only belittling, but dehumanizing. Why? Because it says that they are fodder for entertainment. This process of enfreakment has a long history that includes the freak show sideshows accompanying circuses that put people with visible disabilities and deformities on display for public amusement and pity. When it comes to these types of portrayals, it contributes to the message that says that these are not people worthy of respect or dignity for no reason other than their disabilities.
The suggestion that all or many people with mental health or psychiatric disabilities are now or will in the future become violent murderers or rapists is not only ableist and stigmatizing, but grossly inaccurate. Not only are those with mental health and psychiatric disabilities not any more likely to commit violent crime than the general population, they are at significantly higher likelihood of being targeted as victims of both nonviolent and violent crime. The ableism that perpetuates this harmful myth does a disservice to people with mental health and psychiatric disabilities twice over. It wrongfully insinuates that they are more likely to commit violent crimes--thereby allowing for the disturbing proposition of pre-emptive confinement and containment of these people that sounds suspiciously like Minority Report--and it allows society to ignore their needs when they are victimized by crime.
This is not merely Halloween's ableism problem, but the consequence of ableist attitudes embedded across all levels of society. The commercialization of disability oppression poses a unique problem in that it is doubly exploitative. It harms the disabled and it allows the rest of society to become complicit in its perpetuation. It is morally abhorrent, but rarely questioned. Those in positions of power and privilege can remain unchallenged because they have the social capital and financial resources to maintain their power and privilege. It is no object to oppress people who are already marginalized in society.
In order to combat the frequency of these appallingly ableist depictions of disabled people, we must begin by combating the attitudes that justify and excuse them as harmless and valid. That begins with changing the portrayals we see on TV and in film, in literature, and in the news media. It begins with changing the way we talk about mental health and people with mental health and psychiatric disabilities, whether that be in public speeches or debates, university classrooms or compulsory education, or everyday conversations. It begins with challenging enfreakment as the norm. In the absence of widespread public outcry, both individually and at the organizational level, President Obama will be able to continue to pontificate about keeping guns away from "the mentally ill," reputable newspapers will be able to continue to speculate about how "insane" suspected perpetrators of mass killings must be, and professors will continue to be able to make tasteless, ableist jokes about involuntary restraint and seclusion. The understanding that these rhetorical constructions and public enfreaking depictions of disability contribute to a society in which those with mental health and psychiatric disabilities are unwelcome, unaccommodated, and in perpetual danger of victimization of hate speech and hate crimes is necessary in order to deconstruct them and work toward ending them.
Note: The idea that mental health and psychiatric disabilities, among other temporary or permanent conditions, can render one legally "insane," for purposes of the popularly-called "insanity defense" (in legal terms, "not guilty by reason of mental disease or defect"), deserves another critique in its own essay.
Addendum: The language used in the DC Museum of Crime and Punishment advertisement--"hunting ground for the criminally insane"--actually has two possible interpretations. I intended to include a bit about this in the original essay, but it seems to have slipped my mind. This phrase might be interpreted as furthering the dangerous misconception that people with mental health and psychiatric disabilities are murderers waiting to happen, and that the "hunting ground" is those people hunting down the "normal" people. Its other interpretation, however, is far more sinister and haunting. The second possible interpretation is that the event planners are implicitly condoning the "hunting" of people with mental health and psychiatric disabilities--i.e. that the "hunting ground" is a place for the "normal" people to hunt and kill the "criminally insane." This carries many problematic consequences, not the least of which is the direct condoning of violence against those with mental health and psychiatric disabilities as acceptable.
22 October 2012
Trigger Warning:Extensive discussion of sexual assault and ableism, including a survivor's firsthand account and a lot of sexist and ableist phrases.
Imagine that you are raped.
Then imagine that the first person you tell afterward accuses you of misconstruing the facts.
You're crazy. You're insane. You're imagining things. Surely you don't remember right. He's such a nice boy. A perfect gentleman. He'd never do that. And we would never let that kind of thing happen here. It just doesn't happen. You must be out of your mind. You need help.
After all, it wasn't really rape. It couldn't have been.
This isn't a rare situation.
This is the reality for many rape survivors, with little regard to race, class, ability, education, or age.
Over the last few days, this account of former Amherst student Angie Epifano's rape and the school administration's utter failure to punish the perpetrators has gone viral from the Amherst student paper website. You may have also read this story about former Notre Dame student Lizzy Seeberg's rape and subsequent suicide. In Angie's case, the school officials not only dismissed her account and suggested that it wasn't really rape but a hookup gone wrong, but after she spoke to school counselors, she was involuntarily hospitalized in a psychiatric ward with the not so subtle assumption that she wasn't entirely lucid or competent to be making accusations.
Some excerpts from the articles linked above, starting with Angie—
Eventually I reached a dangerously low point, and, in my despondency, began going to the campus’ sexual assault counselor. In short I was told: No you can’t change dorms, there are too many students right now. Pressing charges would be useless, he’s about to graduate, there’s not much we can do. Are you SURE it was rape? It might have just been a bad hookup…You should forgive and forget.
How are you supposed to forget the worst night of your life?There's more.
She began rattling off the Administration’s policy regarding students released from psychiatric care. In order for students to be allowed back they had to have parental supervision while on campus in order to make sure that the student did not relapse into substance abuse again (the most common reason for student admittance into the Ward). This meant that a parent would stay in a hotel near campus and would then follow their child around for two weeks until the “all clear” period was reached. “And since you don’t have parents…”
She trailed off awkwardly and began to resolutely examine the upper left-hand corner of the dining room.
Panic welled up inside of me.
Did this mean I was trapped on the Ward forever? God, no, I couldn’t handle that. I wasn’t crazy!
Claustrophobia and paranoia dropped on top of me and I wildly scanned the room. I met my roommate’s eyes. She was looking at me with worry: What’s wrong?
The room stopped spinning, the walls went back to their normal locations, I could breathe again, and now I was angry. I told her flat out: Let me get this straight. I was raped on their campus. I had an emotional breakdown because I didn’t feel safe and felt harassed on their campus. I went to their counseling center, like they told me to, and I told them how I was feeling. They decided that I should be sent to the hospital. And now they won’t allow me back on their campus? They allow rapists back on campus, but they won’t allow the girl who was raped back? The girl who did nothing wrong.And after Angie was released from her involuntary hospitalization.
What was the point of staying at Amherst? I had been stuck on campus for eleven months straight; each day had been more challenging and emotionally draining than the previous one. I had been feeling better recently, but each time I met with my dean I felt more emotionally distraught than I had beforehand. Her comments reminded me that in the Administration’s eyes I was the most base individual: a poor and parentless humanities major who was the school’s token-Deep-Southerner. I was sullied, blameworthy, and possibly insane.And she ultimately decided to withdraw from Amherst.
I became even more resolute about my decision to leave, and decided to talk with the Victim Rights Law Center, a pro-bono law firm based in Boston that my survivor group had recommended to me several weeks earlier. My preliminary intake with the VRLC was quite eye-opening: Oh Amherst? Yeah, unfortunately I know Amherst all too well. I’ve been down there many times to deal with the administration and their constant mistreatment of survivors. Our law firm keeps trying to force them to change but they just don’t seem to understand, they keep doing the same old thing.
Amherst has almost 1800 students; last year alone there were a minimum of 10 sexual assaults on campus. In the past 15 years there have been multiple serial rapists, men who raped more than five girls, according to the sexual assault counselor. Rapists are given less punishment than students caught stealing. Survivors are often forced to take time off, while rapists are allowed to stay on campus. If a rapist is about to graduate, their punishment is often that they receive their diploma two years late.
I eventually reported my rapist.
He graduated with honors.Lizzy's story is as appalling.
In a sense, Lizzy’s ordeal didn’t end with her death. The damage to her memory since then is arguably more of a violation than anything she reported to police -- and all the more shocking because it was not done thoughtlessly, by a kid in a moment he can’t take back, but on purpose, by the very adults who heavily market the moral leadership of a Catholic institution. Notre Dame’s mission statement could not be clearer: “The university is dedicated to the pursuit and sharing of truth for its own sake.” But in this case, the university did just the opposite.
In life, Lizzy was both politically and personally conservative, a brand new member of the College Republicans who led her parish youth group and spoke openly about saving herself for marriage. But Notre Dame officials have painted and passed around a different picture of the dead 19-year-old. Sotto voce, they portray the player as wrongly accused by an aggressive young woman who lied to get back at him for sexually rejecting her the first moment they were ever alone together.
This is a pattern.
Let's rank oppressions, shall we? Let's claim that a white rape victim (and anyone supporting her) accusing a Black perpetrator is racist because her rapist happens to be Black. Now, is it wrong when Blacks or other people of color are arbitrarily accused of crimes simply because of their race or blamed collectively for the crimes of other Blacks or other people of color? Absolutely. Is it wrong that our prison system disproportionately incarcerates young people of color at rates staggeringly higher than for white offenders accused or convicted of comparable crimes? It's deplorable. Is it wrong that people of color face the terrible ramifications of racial profiling and the prejudices of predominantly white judges and juries? It's appalling. Of course it is. No one is suggesting otherwise, at least not here.
But to suggest that white rape victims shouldn't come forward when the rapists happen to be people of color is equally horrific. And it's disgusting, because it suggests that the fear of being perceived (wrongfully, at that) as racist should outweigh the need for justice. It's disgusting because it perverts the very real struggles of Blacks and other people of color against a racist and oppressive society for the purposes of sweeping rape under the rug. And because the attorney making this ridiculous accusation is white, well, it reeks of plain old appropriation.
The trouble with ranking oppressions is not only that it gets you nowhere but that it does absolutely nothing to challenge the very systems of power and privilege that perpetuate the oppression in the first place.
The intersectionalities between marginalized communities are not solely that members of one such group may also be members of others but also that the oppressions that affect one marginalized community intersect and overlap with the oppressions that affect others. You cannot operate in silos. You cannot draw attention to a set of issues purportedly belonging to only one marginalized community while ignoring their consequences for other marginalized communities. What happens to the queer community is wrapped up intimately with what happens to the disabled community and to the undocumented community and to the Black community and to the Jewish community and to the poor community. You cannot separate oppressions because they feed from one another.
Our society is complicit in perpetuating rape culture—that is, a culture in which rape and other forms of sexual violence are not only common but are normalized and justified through attitudes and social structures that legitimize and condone them. One major component of rape culture is the ever-prevalent practice of victim blaming, or suggesting that the victim should be blamed for allowing the rape to occur. The easiest example is the "short skirt" scenario. If the victim was wearing a "short skirt," or any other form of dress considered "sexually provocative," then it's her fault, because she was "asking" to be raped. She was "asking" for the sexual attention.
But victim blaming happens in a scarier way, and in a way all too familiar to those of us in the disabled community.
More frequently than not, a common tactic of victim blaming employs ableism as its ammunition for scapegoating the victims of rape as either ultimately complicit in the violence enacted against them or otherwise somehow incompetent and therefore incapable of making judgments about consent or rape. Historically, the power to involuntarily commit another person to a psychiatric institution under the supposition that the person was "insane" or otherwise mentally incompetent was often abused for economic extortion or even simple social retaliation, regardless of whether the victim of this abuse did or did not actually have any mental health, developmental, or intellectual disability. Today, this power is used to silence rape victims.
When you suggest that a rape victim must be insane or crazy, not only are you perpetuating ableism but you are using ableism to justify violence and blame the victim.
When you suggest that a disabled rape victim is incapable of giving or denying consent, you are denying that person's agency and you are presuming incompetence.
When you suggest that a disabled rape victim who does not speak or who was rendered temporarily incapable of producing speech (whether because of selective mutism, dissociation, or a panic attack), you are silencing the victim and de-legitimizing the victim's account.
When you suggest that a rape victim must be insane or crazy, you are implying none too subtly that if the victim were to have a mental health or psychiatric disability, the accusation of rape would be meaningless.
Because if you don't take it seriously when the victim is presumed neurotypical and non-disabled, how are disabled people supposed to believe that you will take it seriously if they are raped when you use accusations of mental health and psychiatric disability to de-legitimize and silence non-disabled victims?
And it does happen to disabled people. The least studied and tracked category of hate crimes are those perpetrated against the disabled. And when disabled people are raped, particularly those with intellectual or developmental disabilities, it becomes not only easy but common to use aspects of their disabilities as reasons to disbelieve their accusations of rape or sexual violence. When people with intellectual or developmental disabilities are the victims of rape, the usual response is to ignore the allegations and suggest that the victims are inherently incompetent and incapable of understanding rape, let alone making accusations against their abusers. And this frightening trend is part of a vicious cycle that both repeatedly re-victimizes disabled rape survivors and victim-blames non-disabled rape survivors within an ableist framework.
(Despite the media portrayals in crime dramas that would lead you to believe that people with mental health and psychiatric disabilities are frequently rapists and murderers, these people are far more likely to be victims of such crimes than to be perpetrators of them.)
You see, it's not enough merely to critique victim blaming that labels rape survivors "insane" or "crazy" as sexist and complicit in perpetuating rape culture. This dangerous practice must also be critiqued for the egregious ableism that lends it any credence whatsoever. To critique victim-blaming solely in the context of sexism and rape culture is to ignore the intersectionality that allows victim-blaming to occur as an outgrowth of ableist attitudes that see disabled people (and people with mental health and psychiatric disabilities in particular) as incompetent, incapable, overly-sensitive, and unaware—to perpetuate a particularly virulent form of ableism that not only sees the disabled as less-than but that also justifies violence committed against us as not as bad as violence committed against the non-disabled.
A quick Google search for "intellectual disability rape no charges" brings over half a million results. Disabled people are disproportionately likely to be victimized by violent crime, including sexual crime, because of the ableist attitude that sees people with disabilities (and especially intellectual and developmental disabilities) as particularly vulnerable, gullible to deception, and incapable of communicating about crimes committed against them. In keeping with this blatant ableism, a man convicted of raping a non-speaking woman with cerebral palsy and an intellectual disability was freed because the justices on Connecticut's Supreme Court ruled that despite a significant mobility impairment, she could have communicated non-consent to sexual intercourse by biting or kicking her rapist—both of which are not actions of which she is physically capable. (See the Johnson article in the sources below.) By holding the disabled to the higher standard of physically resisting an attack when many non-disabled (including non-physically disabled) rape survivors have also not offered physical resistance for a variety of reasons (such as shock, trauma, restraint, fear, or direct threat from the rapist) and are not necessarily blamed for not resisting, the court has essentially ruled that it is within legal realms to rape people with physical disabilities and mobility impairments.
After all, if we don't fight back, we must have wanted it.
Ableism and sexism are ugly enough on their own. Combined? They're a dangerous force to reckon with, capable of freeing and exonerating rapists and silencing and de-legitimizing the victims of rape, all while dehumanizing millions of disabled people and leaving us legally and socially vulnerable to further sexual violence.
Epifano, A. (2012, October 17). An account of sexual assault at Amherst College. The Amherst Student. 142(6).
Henneberger, M. (2012, March 26). Reported sexual assault at Notre Dame campus leaves more questions than answers. National Catholic Reporter.
Johnson, J. (2012, October 2). Man convicted of sex assault on disabled woman freed - court: she could have communicated dissent. Newser.
11 October 2012
Some Autistics can only be partially out or out only in some places or among some people or communities; there are many factors that can cause this to happen. Sometimes, Autistics may be out in the broader Autistic or disability communities, but may not be out at work or at school for fear of retaliation, harassment, bullying, or direct assault. Some Autistics who've identified as Autistic as adults but who may not have been identified as Autistic as youth or children may be out to their friends but not to their families for fear of misunderstanding, gaslighting, or blatant, flagrant ableism.
It's National Coming Out Day for the queer community, for those who identify as lesbian or gay or bisexual or pansexual or demisexual or polysexual or asexual or trans or genderqueer or intersex or non-binary or androgynous or agender or questioning or queer in general (or any combination of the above). So let's talk about coming out.
We had a fantastic event at Georgetown two nights ago called Undocuqueer: Undoing Borders & Queering the Undocumented Narrative, during which four undocuqueer activists spoke of the intersectionality between the queer and undocumented communities, and the political, legal, cultural, and social ramifications of coming out as queer, undocumented, and undocuqueer. One of the speakers, Julio Salgado, spoke of the awakening to the plight and experiences of queers that some straight undocumented people had when they began to adopt the language of "coming out" to refer to publicly identifying themselves as undocumented. They began to understand on a deeply emotional level the personal consequences for queers of coming out because they faced many barriers and dangers in identifying publicly as undocumented, analogous barriers in many ways to those faced by the queer community. This personal investment in coming out serves a means of improving understanding of the kind of coming out for members of another marginalized community.
There is a real danger in analogizing that can undo movements, hint of appropriation, and lead down the path of ranking oppressions. At the same time, there is value in drawing analogies in order to better understand, examine, challenge, and change the systems of oppression and hierarchies of privilege that impact not only all people who belong to any of a number of historically marginalized groups but also all people who are privileged by having these unearned advantages in society. The Autistic rights movement that has been emergent for the last two decades draws much from the Deaf community and the broader disability rights movement. The disability civil rights movement draws much from the Black and African American civil rights movement, though both arose around the same time. The queer rights movement draws much from the Black and African American civil rights movement as well as the women's rights movement. The intersectionalities are broad, enormous, and many. They leave a lot of room, a lot of space, much of it unexplored, particularly where three or more identities converge.
In the Autistic community, and in the Autistic rights movement in particular, we use a lot of borrowed language. Is this wrong and appropriative in itself? If the origins of the terms we use are not recognized and understood, and if the histories of the other oppressed groups from which we've borrowed them are not acknowledged as lending these bits of language to us, then yes, it is appropriative. But in the context of a holistic understanding of the societal hierarchies of privilege, power, oppression, and marginalization, the use of these borrowed terms can become empowering and liberating.
I've heard words and phrases like "autdar" (analogous to "gaydar," or the ability that many Autistics have to identify other Autistics, even among strangers), "flaming Autistic" (meaning someone who presents as obviously Autistic), "self-advocacy" (drawn from the community of people with intellectual disabilities), "Autistic" with the capital A (analogous to "Deaf" with the capital D to denote someone or something related to or part of Deaf culture and identity), and "Autistic space" (analogous to "Deaf space," or space specifically designed around the communication and access needs of Autistics). And of course, there are the ever-present "closeted" and "out," and infinite variations thereof. These terms may be borrowed, but they are accurate in their descriptions of the experiences we've had. They are as analogous as they can be—recognizing the similarities in the experiences while respecting the different circumstances and intersections of privilege and power.
Some Autistics will not come out because they have legitimate fears of losing their jobs or credibility at their schools—these fears are founded on the plethora of such incidents that not only occur but that are justified and permitted in the context of an ableist society that dismisses Autistics as incompetent, incapable, eternally naive and infantile, and therefore undeserving of the same opportunities as the neurotypical. To come out is a revolutionary act that challenges this ableist framework, yet we live in societies that perpetuate complicity with ableism, in societies that are not conducive to allowing Autistic culture and Autistic communities to flourish. The resilience that is necessary to exist in a society that frequently dehumanizes and devalues Autistic lives and the Autistic experience often demands coming out, but cannot compel it. And in far too many cases, the rampant ableism of our world suppresses untold numbers of Autistics who are terrified of the consequences of coming out.
We are more than the discursive and rhetorical constructs of autism and ability and disability. To be Autistic is not to be defective or deficient or ill—to be Disabled is not to be less than or inferior or incapable. Autistic culture is more than a passing, perfunctory phrase wrapped in a convenient package. Disability culture is more than an odd turn of phrase, unfamiliar and uncomfortable to those with able-bodied and neurotypical privilege, or to those who have internalized ableism and internalized their oppression. Most disabled people, most Autistic people have never been exposed to Autistic culture or disability culture. Our history is not taught or acknowledged. Our leaders, pioneers, and innovators exist on the margins of mainstream society, politics, and history. We are so commonly erased that many disabled people only learn that our communities are vibrant and widespread after they've already become adults.
To come out is to challenge the cultural norms that tell us we should remain in the closet. That is true whether one comes out as queer or undocumented or disabled—or anything else, for that matter. Not everyone can come out, not yet. But for those who can, each voice, each face, each name, each person, represents whole swaths of people whom society has told do not deserve to have an identity in which they can take pride and find community.
|Left to right: James Saucedo, Julia Maddera, Lydia Brown, Sivagami (Shiva) Subbaraman, and M. Ferguson
Five people wearing matching pink short-sleeved t-shirts with big black letters that say "i am." on the front. James is a light-skinned man with short brown hair. Julia is a blonde-haired white woman who is also wearing a rainbow scarf. Lydia (me) is an east asian person with black hair and a blue lanyard around their neck. Shiva is a Desi (South Asian) woman with short-cropped grey hair. M. is a white person with brown hair in a ponytail and sunglasses. In front of the five people is a twenty-eight layer rainbow-colored cake with frosting on top of a table covered in a rainbow pride flag. Behind them is a brick wall covered in various college flyers.
08 September 2012
Most of you, perhaps even all of you, will never read this blog post. That's okay. I don't expect you to. (Some of the staff at your national office, however, are another story. They don't like it much when people criticize you.) But I'm writing for the benefit of those well-meaning souls who'd like to know just what they can do to support the lives and needs of real Autistic people right now, but maybe have the wrong ideas about how exactly to do that. Some of you may be standing here in the storm, or trying to hide indoors from it. Or you might be sitting in front of your computer at home, breathing a sigh of relief that you're not here with me in D.C. (The weather truly is horrid.)
The Autism Law Summit happening right now is about insurance reform to "cover autism." Let me translate that. The Autism Law Summit happening right now is about how to lobby for legislation that will mandate insurance coverage of interventions like "ABA." ABA (applied behavior analysis) is the modern form of B. F. Skinner and Ivar Lovaas's theory of behaviorism as applied with vicious and efficient cruelty to the lives of thousands of Autistic children and youth across America. While the ethical, monitored use of it may be beneficial in the case of life-threatening behaviors, its uninhibited use and abuse is a great way to induce internalized ableism, self-hatred, and post-traumatic stress disorder. Many Autistic adults who were put through ABA as children now have PTSD. Those who weren't subjected to it seem less likely to have PTSD. Let me put it this way -- what the people at the Judge Rotenberg Center do? Yeah, that's ABA. An extreme and very patently obviously abusive form of it, but ABA nevertheless.
I would like all of you currently sitting at George Washington Law grateful to be indoors and out of the storm, know what I think the priorities in law as applied to Autistics should be.
Rather than focusing on laws that will reassure you that it is not merely legal but legally sanctioned to subject your children to therapies focused on normalization, making them indistinguishable from their peers, and suppressing natural ways of speaking and moving, you should be concerned about what is happening to them at school. You should be concerned about what unscrupulous advocates and judicial officials are urging you to do to your children when they leave high school. You should be concerned because Autistic children are disproportionately likely to be referred to the juvenile justice system for behavior and offenses that would not result in such referrals for typical children. You should be concerned because Autistic youth and adults are disproportionately likely to be determined unable to work, inappropriately reerred to sheltered workshops, and subjected to egregious abuses in the world of employment. You should be concerned because another state (Florida) was just added to the list of states in trouble for violating Olmstead.
The treatment that we receive as sanctioned by the law, under existing laws, and because there are few laws to protect our rights is a direct result of the narrow-minded focus on "what will help us make our children more normal." This provincial lens serves not merely to deny your children opportunities now, but to reinforce old prejudices and systems of belief that allow these legal institutions to be perpetuated. The law affects our lives, for better or worse, across the lifespan.
Less than half of all states have statutory limitations on the use of restraint and seclusion in schools, and only slightly more have strict regulations against their use. Only six states have statutorily mandated education about autism for police and first responders. Not one state keeps records on hate crimes committed against the disabled, and neither does the federal government. Several states still maintain institutions, and people like me remain confined there without access to, much less integration into, their own communities on the other side of the gates.
If you are going to talk about autism and the law, talk about what you can do in policy, regulations, and legislation to advance full inclusion in schools, provision of integrated and inclusive work opportunities doing meaningful work, prohibit adverse discrimination in healthcare and medical decisions, end segregation and institionalization in housing opportunities, promoting the education and empowerment of Autistic youth and adults to influence local, state, or national policy, and ending abuses and violations of our fundamental human rights everywhere. We don't need or want ways to make us more normal. We want our human and civil rights, and we want to be treated as fellow human beings and citizens under the law the same as everyone else.
We want laws that will prevent hospitals from denying us eligibility for transplants on the basis of false assumptions about our quality of life and how we live. We want laws that will prevent clinicians with PhDs from electric shocking us like lab experiments for looking at them the wrong way. We want laws that will ensure that when people kill us, they go to prison just as they would if the victim had been nondisabled. We want laws that will ensure our just and equitable treatment in the criminal justice system. We want laws that will challenge and end all segregation and institutionalization.
These are the laws that are important to us. Why aren't we there, at this "Autism Law Summit?" Why aren't these issues being discussed? Because in the end, this summit happening not too far from where I sit isn't about us, after all. It's about pandering to ableist notions of what should be done to Autistic children in the name of normalization, and it's about being able to claim that they're doing something important and meaningful while ignoring the real issues. While ignoring our murders, both active and passive, and while ignoring a long train of abuses perpetrated against us because the law either permits it or looks the other way. And because of that, thank you, but I'm content to stay in Farragut this afternoon. Enjoy the storm.
23 August 2012
As a pseudo-NT, I see a world that is totally made for me, and that supports everything about my (okay, almost my) neurology, social functioning, emotional awareness, food needs, auditory processing capacities, sensory processing capacities, and every other thing. I'm surrounded by continual, seamless, unending support that I don't even see, because it's the "regular" world.
Two people with disabilities, one dyslexic and one autistic, walk out of housing check-in for the 2012 AAPD Summer internship. To reach their dormitory, they must correctly choose whether to go right, left, forward, or back, at every intersection along their five-block route. It is dark, it is raining, and they are in an unfamiliar city. They are equipped with a map which one of them cannot read and the other one cannot understand. Given these facts, how long will it take this hapless duo to reach their lodgings? Will they, in fact, ever arrive?I am the autistic person in this scenario. The dyslexic person is Phred, my fellow intern and, because the situation I described proved to be a bonding experience, my new friend. Phred found the map’s small print, and to a lesser degree the street signs, challenging to read. She generally prefers such things in an audible format. For my part, my spatial reasoning is such that I could not successfully extract myself from a paper bag in 4 out of 5 trials....If you emphasize the aspects of our disabilities which cause us the greatest difficulty in our daily lives, you might guess that Phred and I spent that night huddled on the sidewalk, awaiting rescue. If you consider our strengths, however, you might arrive at a different conclusion. As it happens, I am very much at ease with reading words. And Phred, like many dyslexic folks, has a very strong sense of spatial awareness. We quickly found that we could each function as one half of a GPS, and in combination we can be an unstoppable route-finding force.
When talking about people like Phred and me, “experts” often present dire scenarios in order to prove that we are incapable of living independently. Phred’s and my adventure with the map might even qualify. Some people would say that since we each required some assistance in this scenario, we could not be considered “independent.” However, one thing that we learned during our orientation is that the definition of independence needs to be broadened when discussing the lives of people with disabilities. Instead of asking, “can this person do any and all tasks without help?” we should ask, “does this person have the help that they need to live the kind of life they want to live?”
22 August 2012
12 August 2012
Disability as a constructed concept is not a commonly understood or propagated idea in the mainstream of an ableist society. The average non-disabled person, and frequently even disabled people who’ve had limited or no exposure to disability rights theory or disability culture, does not understand disability beyond something that happens to other people, thereby rendering them tragic objects of pity, scorn, and charity. The general understanding of disability among those whose professions and research lie in the long-established fields of health sciences, rehabilitation sciences, special education, and abnormal psychology is one of a highly and often exclusively medicalized model that understands disability as a pathology in need of treatment, remediation, rehabilitation, and mitigation.
For theorists in the emerging interdisciplinary field of disability studies who are increasingly disabled themselves, there are two foundational understandings of disability—essentialism posits that disability is inherent to the person, whether innate or acquired, while constructivism posits that disability is a social construct and exists only because of sociological, cultural, or political factors. Those who understand disability as a medicalized phenomenon through the lens of an exclusively biological or psychological model of disability are essentialists. Those who insist that there is no such thing as disability or that everyone is disabled in some way are frequently constructivists.
But it cannot be denied that disabled people of any particular disability or condition do have inherent differences from nondisabled people or people with different disabilities. The Autistic brain is different from the non-Autistic brain; those who are Deaf or Blind perceive the world in different ways than those who are hearing or seeing; those who use wheelchairs move differently than those who have no need to use wheelchairs. These differences are real, and the differences are certainly not social constructs. Thus, constructivism does not adequately address the lived and inherent neurological, mental, emotional, and or physical differences that disabled people of any particular group have from those outside that group.
Yet essentialism discounts the roles that lived experiences, attitudinal biases and prejudices, policy and systemic barriers to access, societal ableism, constructs and representation of disability, and hate crimes play in the lives and shared experiences of disabled people across all sectors of society. Essentialism does not address the systemic denial of equal access and opportunity for disabled people in education, housing, community and social life, healthcare, employment, and policymaking. And it certainly fails to consider the consequences of rhetorical and discursive constructions of disability and the disabled experience.
Disability is far more complex and nuanced than either pure essentialism or pure constructivism are capable of adequately conveying. The experience of disability, of being disabled, arises when a person whose neurological, mental, emotional, and or physical differences are atypical and divergent enough from the neurologies and physicalities of the majority so that this person is forced to exist and live in a society and world not constructed to incorporate natural supports and full inclusion and access for people like this person. That is, the experience of disability and being disabled is the result of the interaction of a person’s inherent differences with a society and its attitudes and policies.
On the Massachusetts island of Martha’s Vineyard, it used to be that a significant percentage of the island’s population were deaf until the mid-twentieth century.[i] As a result, nearly all residents learned Sign language from an early age, whether they were Deaf or hearing, and easily switched between signing and speaking without much effort or thought regardless of who was present in the conversation. Today, there are no longer any Deaf people born into the signing tradition living on Martha’s Vineyard, yet elderly hearing islanders continued to communicate in Sign language as late as the 1980’s.[ii]
In communities where everyone or nearly everyone shares the same sensory, physical, cognitive, or emotional experiences, such differences that might in mainstream society be considered to be deficits or disability are not, in fact, disabling at all. While divergent and diverse neurologies and physicalities exist in nature and in isolation of cultural, sociological, historical, and political context, disability does not exist in the absence of a society’s rhetorical and discursive constructions of it that create attitudinal, systemic, and institutionalized barriers to access for those whose neurological and physical variances are atypical.
In order to fully understand disability and the disabled experience, and in order to effectively and meaningfully advocate for attitudinal and systems changes that will lead to equal access and opportunity in a more just and equitable world for disabled people, it is imperative to both examine and challenge the common rhetorical and discursive constructions that posit disabled people as the Other and disability as a pathology, while at the same time suggesting a radically different construction and understanding of disability and the disabled experience as natural and normal parts of the human experience.
Disability has historically been understood in the paradigm of a strange and alien other, as evidenced by the sterilization and eugenics movements targeting the disabled for fear that we might bear disabled children and perpetuate disability. Even today, disabled people who wish to kill themselves are more frequently praised as brave and courageous, and offered the option of euthanasia, while non-disabled people who express the same suicidal ideations are referred to anti-suicide counseling and support.
The lives and humanity of disabled people are routinely questioned not merely by the supposedly objective and well-meaning professionals hailed by the public as experts on disability, but also by the mainstream media. Disabled people face prejudices and attitudinal barriers such as the presumption of incompetence, infantilization, dehumanization, the belief that disabled people are incapable of being sexual beings, paternalism, and the prevailing assumptions that our lives are tragic and that it should be normal for a disabled person to seek to be cured of disability. We are frequently assumed incapable of having opinions or directing our own lives, treated as children even when we are adults, denied access to basic healthcare or education, deprived of accessible or meaningful sex education or even the opportunity to form romantic relationships, treated as though our opinions and ideas have no value, and discussed as though we are not present and cannot be.
Our experiences and lives are usually described through a paradigm of grief, pity, shame, scorn, tragedy, and fear. Our non-disabled parents are taught to mourn their disabled children’s existences and to wish for their children to be cured. Our neighbors are taught to pity us, and our families are taught to be ashamed of us. Youth who believe that their intentions are good are taught that our lives are inherently tragic and that they should be afraid that more children will be born disabled if they do not contribute money to charities working frantically to eradicate disability. If media portrayals and representations of disabled people are to be believed, we are incapable of living full, rich, and meaningful lives, and we remain perpetual children regardless of biological age. Society teaches the non-disabled to fear and pity us, and it teaches us to be ashamed of and hate ourselves.
The concept of disability pride, which has existed for decades in an organized fashion, is revolutionary in its biting response to the paternalism and discursive constructions of disability popular in our society. The idea that people with deformities, people with visible physical disabilities, and people with neurological or mental disabilities are capable not merely of accepting themselves but of publicly proclaiming their pride in being disabled is anathema to a society in which deviation and divergence from neurological and physical typicality is labeled pathology and defect. Yet it is a necessary idea, because we who are disabled must continue to reassert our necessary presence in shattering old rhetorical and discursive constructions of disability while creating and perpetuating new ones.
Without significant changes in societal and individual attitudinal barriers to access, there will be no meaningful systems change, no changes to policies and institutions that create further barriers to equal access and opportunity and full and equal participation in all facets and aspects of life. Few outside the disability community ever consider the consequences of their perceptions and limited understanding of disability, and many whose views are shaped by unsound and dangerous ideas continue to perpetuate ableism without ever having their privilege challenged and examined. Disability exists because we are largely complacent in allowing ourselves and our society to perpetuate a world where disabled people are marginalized and oppressed by attitudinal and systemic barriers to access.
We need the concept of universal design to move from small academic circles and pilot programs in public schools to a foundational principle of all aspects of life, culture, and society. We need to incorporate the language of the Developmental Disabilities Act, which describes disability as a natural part of the human experience, into our fundamental attitudes and everyday practices. We need to stop using language that marginalizes and oppresses and begin to craft rhetorical and discursive constructions of disability that recognize our innate ability to lead full, rich, and meaningful lives as disabled people across the lifespan. We need to stop medicalizing and pathologizing every characteristic belonging to disabled people, and begin to address the problems and deficits in our society and its institutions and policies rather than looking to problem-find in the disabled person. We need to stop presuming incompetence and dehumanizing disabled people, and begin to presume competence and recognizing the innate humanity and equal quality of life of all human beings.
We need to build a world in which all supports are natural supports provided unquestioningly, without the feeling of legal or contractual obligation, but because of a sense of human dignity and decency, and where those supports are not viewed as accommodations for a standard system but natural and normal facets of a universally designed system. We need to educate young students, young researchers, young clinicians, young educators, and young service providers about the diverse and rich history of disability cultures and communities in the context of a disability rights activist movement and a disability studies interdisciplinary scholarship, and we need to encourage and support young disabled people to empower themselves and their peers to demand equal access and opportunity and full and equal participation and inclusion. We need to educate our children and youth about disability as diversity, and we need to incorporate our history into mainstream history.
Ultimately, we need to challenge the constructions and institutions that continue to perpetuate ableism across all facets of society, and we need to promote this radical notion that disability is natural and normal—not something to be feared or pitied, but something to be welcomed and proudly proclaimed.
[i] Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha's Vineyard. Cambridge, MA: Harvard University Press.
[ii] Sacks, O. (1989). Seeing voices: A journey into the world of the Deaf. Berkley and Los Angeles. California: University of California Press.
02 August 2012
- You are speaking to an adult. Do not use a baby voice.
- Do not ask where the adult's parent, caregiver, personal assistant, or staff person is. This person is an adult and will not necessarily be accompanied by someone else.
- Don't assume that the adult is ignoring you if he, she, or xe isn't looking at you or making eye contact.
- Don't assume that the adult is ignoring you if he, she, or xe is looking at a phone, an iPad, or elsewhere in general.
- Don't assume that the adult isn't hearing what you're saying if he, she, or xe doesn't give you "yeah," "uh-huh," "mm-hmm," etc. responses while you are speaking.
- Pause when you're done talking long enough for him, her, or xir to begin speaking or typing.
- Be cognizant that the adult may have cognitive processing delays, and give him, her, or xir extra time to process what you're saying and formulate a response.
- If you are speaking to an alternative and augmentative communication user (i.e. an adult who communicates using picture cards, signs or symbols, a letter board, or by typing), give him, her, or xir even more extra time both to formulate responses and to produce them. AAC takes longer than speaking, so make sure that the adult is actually getting equal time to "speak."
- If the adult has a personal assistant, caregiver, parent, or staff person accompanying him, her, or xir, do not speak to the Autistic adult through the other person or ask that person questions about the Autistic adult. Address the Autistic adult directly.
- If the adult has a service animal, such as a dog or a cat, do not touch, call to, or make sounds at the animal without explicitly asking the owner for permission.
- Don't feel awkward or rude if you're looking at the Autistic adult's eyes or face and he, she, or xe isn't looking at yours.
- Don't ask him, her, or xir personal questions, such as those related to his, her, or xir health and wellbeing, sexual life, or finances that you would not ask a nondisabled adult of similar acquaintance.
- Don't ask an Autistic adult what he, she, or xe does or where he, she, or xe went to college, because a disproportionate number of Autistic adults are unemployed, underemployed, and or denied access to college. While there are many Autistic adults in meaningful employment and who are in or have completed postsecondary education, there are many more who are not yet, and asking this question can create awkwardness and tension.
- If you happen to be talking about relationships, romance, or sex, don't assume that the adult doesn't or has never had a relationship or sex. While many Autistic youth are denied access to sex education, the diversity and wealth of sexual experiences and romantic and sexual relationships that Autistic people have had are equal to the diversity and wealth of sexual experiences and romantic and sexual relationships that non-Autistic people have had.
- If you happen to be talking about parenting, don't assume that the adult isn't a parent unless he, she, or xe has already told you that he, she, or xe isn't one. Many Autistic people also have children. (Sometimes, their children are Autistic as well.)
- If you need to ask the adult a question, try to make the question as specific as possible. Broad, generalized, and vague questions are cognitively inaccessible to many Autistic people.
- Don't yell, scream, or shout at the adult. Loud voices can trigger panic attacks and extreme anxiety.
- Don't stare at the adult if he, she, or xe is stimming -- fidgeting with an object or hair, flapping the hands or arms, pacing, making noises, spinning, rocking, etc. -- and don't feel awkward about it, either. This is normal and natural behavior.
- NEVER tell an Autistic adult to have "quiet hands." Ever.
- Don't tell an Autistic adult that he, she, or xe is wrong about what he, she, or xe is thinking and feeling. That's called gaslighting. He, she, or xe knows him, her, or xirself best.
- If an Autistic adult refers to him, her, or xirself as "autistic," don't correct him, her, or xir and say that that's disrespectful or offensive, and that the adult should be saying "person with autism" instead. Everyone has the right to identify however they wish.
- Don't use the word "retard" or "retarded" in the adult's presence. Too many of us have been bullied, silenced, and attacked with this word to ever make that okay.
- If the adult tells you that he, she, or xe needs to leave an area to continue the conversation, listen and do it. The location may be causing sensory overload, anxiety, spoon loss, or other barriers to effective communication.
- Never touch an Autistic adult without asking first, unless he, she, or xe initiated (i.e. by reaching to hug you or offering a hand for a shake). If the adult doesn't initiate, ask, "do you do hugs?" or similar.
- Don't feel awkward if the adult seems to change the topic of the conversation suddenly. You can always suggest going back to the original topic if you still want to discuss it -- though if the adult tells you to drop a topic, drop it.
- You are speaking to an adult. Speak to him, her, or xir with the same vocabulary, tone of voice, and type of conversation that you would with any other nondisabled adult in a similar situation or of similar closeness or acquaintance.