31 May 2013

Stop Hurting Kids: Campaign to End Restraint and Seclusion

Last night, I had the honor of attending the live kick-off film screening for the new Stop Hurting Kids campaign against restraint and seclusion here in Washington, DC. The film screening was held at the National Youth Transitions Center, and the producer, Dan Habib (who is also responsible for the films Including Samuel and Who Cares About Kelsey?), was there to speak on the importance of opening a dialogue on abuse in educational settings. Three of the folks featured in the newest film, Restraint and Seclusion: Hear Our Stories, also gave remarks that emphasized moving away from pity and toward actionable anger. Those people were Helena Stephenson, a woman with Asperger's syndrome and parent of an autistic son, and Wil and Maren Beaudoin, whose son Andre was a victim of repeated restraints.

Image description: The photo is centered on a single white woman with straight black hair falling just above her busts. She appears to be in her twenties and is speaking, with a microphone mounted on a podium in front of her. She is wearing a short sleeved button-down shirt open to reveal a black cami, and a silver heart-shaped pendant. Behind her is a brick wall. 
(The "Stop Hurting Kids" Facebook page captioned this photo as follows: "Helena Stephenson talks about the importance of advocacy, and action, and how she's inspired to ensure her child never feels unsafe in school the way she did.")

This campaign was launched on the heels of the re-filing of Representative George Miller (D-California)'s bill against restraint and seclusion (Keeping All Students Safe Act) after two failed attempts in previous sessions. (I was also at the hearing last summer on SB-2020 before the Senate Committee on Health, Education, Labor, and Pensions.) The video seeks to highlight the voices of survivors and parents of survivors in exposing the traumatic consequences of restraint and seclusion, and offers deeply troubling, intensely personal reflections on the matter. You can watch the film in its entirety on the website, and it is captioned there. Unfortunately, I don't have a complete transcript available in text-form at this time.

Image description: It is a room with white marble walls and silver metal elevators (two of them) and then what appears to be a white stone statue mounted on a silver metal panel in the middle of the marble walls. There is a large group of people sitting in the room. In the front row, facing their left and the viewer's right, are a middle-aged white woman with brown hair wearing a bright light blue shirt and sweater and white pants; an older white woman with short white hair wearing a black and speckled dress and a black elbow-length sweater; and a young Asian woman with short black hair and glasses wearing a pink and purple plaid collared shirt and brown hair, holding a microphone and speaking into it. The other people, who are mostly white and Black, are looking toward her.
(The "Stop Hurting Kids" Facebook page captioned this photo as follows: "Lydia Brown, advocate and Georgetown student, comments [on] restraint and seclusion advocacy during the post-film discussion session.")

Disabled students, students of color, and other marginalized students are disproportionately likely to be subjected to restraint and seclusion. In 2009, the U.S. Government and Accountability Office issued a report detailing numerous instances of deaths and serious injuries resulting from restraint and seclusion. These are also commonplace practices in institutions like the Judge Rotenberg Center, where they are likely to be coupled with aversive procedures as well.

I actually need to continue (and finish) writing something on a related topic, so this somewhat incoherent and non-linear post is going to end here, but definitely check out the campaign, and send emails or letters or make calls to your Senators and Representatives to urge them to support the Keeping All Students Safe Act!

29 May 2013

don't forget

Don't forget.

No system of oppression operates independently of any other system of oppression.

Ableism thrives on heterosexism, racism depends on classism, sexism is intimately wrapped with binarism, ageism snakes through ableism and sexism. Oppression builds upon itself. It is intellectually and morally irresponsible to go about social justice without acknowledging this insidious phenomenon. Our movements will fail, ultimately, if we do not understand how oppressions converge and work for transformative justice instead of aligning solely along individual axes of identity.

It is impossible to separate my identity from my disability, my gender, my sexuality, my race, and my class. Even were I to disavow these labels, I would continue to inhabit a body that has been disabled, gendered, racialized, and classed.

Yet too much conversation on particular forms of oppression, and especially disability, focus on the individual mind/body as the location of oppression. While such isms (prejudice + power) do operate at the micro-level on individual bodies, I contend that discourse on marginalized identities must take a turn toward the macro-level and consider how oppression is created and perpetuated in society, culture, and politics. This emphasis on the individual too frequently serves to ignore how oppression is the result of broad, sweeping paradigms that enforce constructed normals/ideals while marginalizing communities, movements, and bodies/minds that serve to challenge those normals/ideals.

When violence is enacted on an individual person, violence is also enacted against entire communities.

Don't forget.

25 May 2013

Interrogating Competency in the Mentally Disabled Subject

Trigger Warning: Discussion of ableism, use of conventionally ableist terms, mention of drug use, mention of rape, institutions, de-legitimization, and gaslighting.


Interrogating Competency in the Mentally Disabled Subject

Those of us who live with psychiatric, developmental, and neurological disabilities know intimately that our ability to be regarded as competent, reliable, or trustworthy hinge closely on whether we are read as disabled or non-disabled, as mentally divergent or neurotypical, as mentally crippled or able-minded. Our perceptions, our ideas, our knowledge, our beliefs—these are routinely ascribed to feeble, addled minds presumed incapable of reasoned thought or objective belief. Just as marginalized bodies and minds are marked as abnormal, the ideas emanating from marginalized people are marked as incredible and dubious.

There's an episode of Law and Order: Special Victims Unit ("Educated Guess") that surprisingly did quite well in addressing the lived consequences of this reality—not once, but twice.

Educated Guess opens with Detectives Fin and Rollins from the main cast waiting in a park to catch a man who's been groping women. When they see him, he strips naked in front of passerby and then collapses, stating that his girlfriend is physically present and mocking him although the detectives do not see her. The suspect, Darren Bickford, is taken to the psychiatric ward at LaGuardia for assessment, where it is suspected he has been under the influence of drugs. When Darren is left unguarded for a few minutes, he accidentally witnesses someone raping a woman on the ward and calls for help.

During Darren's arraignment, which is held at the hospital, he describes the rape that he witnessed the night before only for Fin and Rollins to immediately disbelieve him and dismiss his story as unlikely and imaginary. The judge instructs them to investigate anyway.

After questioning Darren further about the rape he witnessed, Detectives Benson and Rollins eventually identify the victim, Gia Eskas, who is a patient on the psychiatric ward. Over the course of most of the rest of the episode, they learn that Gia (who is initially reticent to disclose any information or admit to the rape having happened) has been raped repeatedly by her uncle George for ten years since she was fourteen. When she first told her mother, she was dismissed as simply crazy because of her psychiatric disabilities and she recanted. She is dismissed repeatedly over the episode as unbelievable, manipulative, and lying, and presented as having a history of making false rape accusations.

At one point when Benson assures Gia that George will go to prison, Gia replies that that's not how things work in the real world. In the real world, she says, he's sane and I'm not. Even when the detectives arrest George in front of Gia's mother and aunt, all three of them insist that Gia is crazy and lying. The entire episode is predicated on the notion that there is something fundamentally wrong with the presumption of incompetence so frequently hung onto the mentally disabled.

The sad truth is that many in law enforcement and throughout the criminal justice system are all too prone to latch onto these insidious notions of (in)competency, thereby exculpating those responsible for violence against the disabled at the micro-level and reinforcing institutionalized violence against us at the macro-level. Law and Order SVU doesn't always do particularly well with representing disability. I've heard the show uncritically describe disabled adults as mentally toddlers and seen it frequently portray disabled people as using their disabilities as "excuses" for committing crime; in other places, I've seen the show portray disabled subjects in strictly stereotypical, flat roles useful as plot devices and not as subjects worthy of the same consideration in character development as abled subjects. But I was pleasantly surprised by the show's engagement with this question, with the question of competency for those of us who are mentally disabled. Perhaps that means a broader societal reconsideration of what it means to be competent and what the ramifications are of presuming incompetence, as well as the underlying causes of the phenomenon.

After all, understanding the socio-cultural framework that informs the presumption of incompetence attached to disability, and to mental disability in particular, is critically important to any meaningful interrogation of the concept. There's an excellent book called Presumed Incompetent: The Intersections of Race and Class for Women in Academia that examines the same phenomenon as experienced by those whose bodies and subjectivities have been racialized, gendered, and classed. Along those lines, Joanna Kadi's paper "Stupidity Deconstructed" turns discourse on competency toward the usage of disability-rhetoric to enforce dominant class narratives that oppress the poor and working class. Yet there is the commonplace assertions of competency and independent agency by disabled people without intellectual or psychiatric disabilities who simultaneously state that they are neither "stupid" nor "mentally ill" in a direct move to sever themselves from a distinct part of the disability community while perpetuating another form of ableism. Works like James Trent's Inventing the Feeble Mind: A History of Mental Retardation in the United States and Michel Foucault's History of Madness seek to respond to such derisive contentions with explicit criticism of the categories of "mental retardation" and "madness" within the context of structural systems of cultural and political power.

The core contention that all people ought to be presumed competent is itself dismissed as untenable by the very same cyclical arguments that posit that disability alone precludes reasoned or self-cognizant thought. Faced with this barrier, impenetrable within its necessitating framework, it is no wonder we encounter those who harp repeatedly that we are out of touch with reality, unaware of ourselves or those around us, incapable of expressing meaningful thought, and unable to make choices for ourselves, much less that we can or ought to be taken seriously or treated as subjective equals. Given this reality, it should hardly be surprising that disabled survivors of violence and abuse are so reticent to seek redress in a system that routinely assigns blame to the victims, dismisses them as incompetent to recognize what actually happened to them, and enacts further violence and brutality against them. After all, those are only the natural consequences of such systemic ableism.

23 May 2013

Deconstructing Disability

Trigger warning: Mention of ableist slurs, discussion of medical view of disability, some brief but graphic descriptions of violence.

Earlier this week, I had the honor of appearing on an episode of Al Jazeera's The Stream to discuss ableism and disability in society alongside Lawrence Carter-Long (from the National Council on Disability), Gregor Wolbring (Professor of Disability Studies, University of Calgary), and Tommy Edison (better known as the Blind Film Critic). Below is the video followed by a transcript written by the amazing and awesome Nadia, to whom I will be permanently indebted for transcribing a good chunk of videos I send! (Nadia also credits Lauren Tuchman with doing a second-listen.) This aired live internationally on Monday 20 May 2013 for Al Jazeera English.

[electronica music with prominent beat]

Hello, I'm Femi Oke, and you're in the Stream. Today, a new way of seeing film, by talking to a man known as the Blind Film Critic, and then later on, a conversation about ableism, or the stereotypes faced by people with disabilities.

[music reemerges and subsides]

Femi Oke: Additional producer Malika Bilal is here looking out for your live feedback, because some of our favorite conversations are the ones where everybody has a point of view. What are you seeing online?

Malika Bilal: This is definitely one of those where everyone has something to say about it. And a lot of what they're saying is, what do we say about it, and how do we say it? I'll explain. We asked our community: do you think society has a hard time talking about people with disabilities? Mikey tweets back--one of many--he says "It's difficult to discuss disabilities with someone who has a disability, for fear of offending." You know, those of you at home, we want to hear your views as well. So join the conversation with the hashtag "AJstream".

Femi: And joining us in the studio, we have Lawrence Carter-Long, and Lawrence is a long-time disability advocate. He currently works with the National Council on Disability, and that's an independent federal agency that advises the U.S. government on policies affecting people who are differently-abled. Lawrence, welcome.

Lawrence Carter-Long: Thank you. My pleasure.

Femi: Something I've wanted to ask you straight off is about ableism. That term is new to many of us. In a nutshell, what does it actually mean?

Lawrence: Well, depends who you ask. You're going to get different definitions depending on who you talk to. But in a nutshell, ableism is the disregard, or the not even taking into account, the needs of people with disabilities. So you can either--you know, many forms of discrimination are blatant, right? You call someone a name, you keep someone from a job. With disability, it's a little bit different in that "it's not my fault that you didn't think about a wheelchair-ramp when you built the building"; "it's not my fault that you didn't have a braille menu in the restaurant", right? Many of those things that happen with regard to discrimination against disabled folks are not about malice so much--they're about proximity. And that's the bridge we need, kind of build right here.

Femi: He's Lawrence Carter-Long. You'll be hearing more from him in just a little while. Now, some people might see disability as a challenge to overcome, but for those who have disabilities, what is often the greater obstacle is overcoming society's prejudices against them. So what are the stereotypes that disabled people face, and what can be done to change these negative perceptions? To help us discuss this is Gregor Wolbring. He's a professor at the University of Calgary, where he teaches disability studies. In Boston we have Lydia Brown, a student activist and author of the blog "Autistic Hoya". Also joining us is one person who's changing the way people think about disabilities, and that's Tommy Edison. He's better known online as "The Blind Film Critic", and from his YouTube Channel, "The Tommy Edison Experience", where he answers a variety of questions about his everyday life as a blind person.

Tommy, I want to say it's good to see you, and then I'm getting into very sticky territory! Is that okay to say that? [laughing]

Tommy: [laughing] No! Oh it's nice to be seen, don't you worry about a thing!

Femi: I'm going to start off first of all by playing one of your reviews, because I think people really have to see it to believe it, so here's a review of "Inception". Check this out:

[embedded video clip]

[slightly raspy voice with ominous music] There's one thing you should know about me. I specialize in a very specific type of security [camera clicking sounds] subconscious security.

[second voice] You're talking about dreams?

[deep full horns]

[Tommy's voice] There were parts of these movie--I'm telling ya, I had not a clue as to what was going on. But you know, here's the thing. I think sighted people have the same problem--you just have to wait and it all gets explained for you. [ominous music returns in background] The atmosphere that they created with the movie was incredible, a nice slow burn with the character development and the story arc and everything. [crashing sound, shattering glass] So it's an action movie, right? You know how these things are. [sound of cars speeding] They're these long passages where there's plenty of stuff going on, but with no picture? All you hear is gunfire, [gunshots, yelling] screaming, some car chase, little bit of grunt and some other human noises. [explosion sounds] But it doesn't matter because the way this movie's written, they tell you after the scene what all the action was and explain it to you one more time. Nice job Christopher Nolan, seriously. So for "Inception", I'm going three and a half eyes open. What a great film. [embedded video clip ends]

Femi: Tommy, out of all the professions you could possibly have chosen, why film critic?

Tommy: Well, you know, it's a thing I've always been interested in. I've always liked film and we just got to talking about it one night with a friend of mine that makes the videos and I were talking. And we got to talk about movies that don't really have any real audio payoff. And so one thing led to another and we started two or three movies. It was, you know, Monday night, Thursday night, we were off doing our very first one.

Femi: I wanted to sense how you could watch a movie and so you gave me some homework and I watched "Goodfellas", and I got a sense of what was happening in different scenes--and thank you for suggesting that one because at least it had some narration to help me through, but there were definite parts where I had no clue what was happening. I had to kind of guess. So how do you do it, how do you a genuine review and there are parts where you actually, you can't work out what's happening?

Tommy: Well that's--you know that's just--that's just what we were talking about in the "Inception" review too. So I have to sit and wait and hope that they'll explain it afterwards. And in "Goodfellas" they really do--they do a nice job of telling you everything that went on. So some movies do that and some don't. And then, you know, after we've seen the movie--like during the film for example, I don't talk to my producer Ben about what's happened in the film. We don't talk about all. After the movie I'll ask questions: "What was happening here?" "Was this going on?" And you know, I kind of guess and I think I guess right, you know, probably 80% of the time--85% percent.

Malika: Well, you know, we put out to our community that you'd be out on the show and got tweets in with questions for you. And you do this all the time on your YouTube channel--answer questions that people may have. There's one from Osman Nur--have a listen. He says: "If you could cure your own blindness, and not have it affect your career, would you?"

Tommy: You know, I--we did a video on that too, that's on the Tommy Edison XP channel and, you know, I think eventually I would like it, but I think it'd be really exhausting. I mean, there'd be so many things to learn. I don't know what colors are; I don't know what people look like; I don't what I look like. You know, depth perception, there's millions of things to learn. I think I'd be real tired, but, you know, when--I think when the rubber meets the road, I think I would yes, go for it.

Femi: I'm actually looking at the Tommy Edison Experience, which is almost "ask you anything".

Tommy: Yeah.

Femi: And people ask all sorts of questions. Are there any questions where you feel maybe that's too intimate or too personal? Are you game for anything?

Tommy: No! Anything you wanna know, I'll tell you about. I mean, I'm an open book and how're you gonna learn if you don't ask, right?

Femi: Why did you feel that was important, just to be available to people--accessible to people so they can ask you a thousand questions about your experience as a blind man?

Tommy: Well, there aren't many of us, are there? I mean, there's--it seems like there's a very small number of blind people. There are more people with visual impairment that can see a little bit. But people don't know what to do, you know? So I think, if you can learn and get to ask somebody who's real honest and upfront about it, you know, live it up. Ask anything you like, I'm here.

Femi: What word would you use to describe yourself? There are so many different ways to describe people with different abilities--physically, mentally. How would you describe yourself--where does the language fall for you?

Tommy: Me? I'm cool. [Femi and Tommy laughing] No, I don't know, like, I'm blind? That's--that's what it is. You can call it anything you like but you know, it still means the same thing--I'm blind. So I mean, that's what I am. But I don't really think about it too much.

Femi: Let's bring Lydia into the conversation. Lydia, language is such a hot potato. It's something you address a lot. Are there pet peeves that you have--words where you just think "I just do not want anyone to use that word about me"?

Lydia: Well, there are certain words that are generally recognized as slurs against disabled folks, like for example, the word "retarded" is pretty commonly recognized. Oftentimes the word "cripple" is recognized. Sometimes you'll hear from folks who'll point out words that unfairly stigmatize folks with psychiatric disabilities, like "crazy" or "insane" or "mad". And those are oftentimes words that are used as everyday kind of insults, or even just as every day descriptors, but in fact sort of perpetuate a kind of stigma against disabled people that a lot of people, and sometimes even a lot of folks who are disabled, don't necessarily identify with, or don't recognize as being there. So I'd have to say that there's a lot of terms like that, that are very pervasive in the language that people use all the time that actually do contribute to an environment of hostile attitudes towards disabled people.

Lawrence: Yeah, I'd say there's insider language and there's outsider language. You know, there's language that amongst ourselves folks with disabilities will use, and there's language that other folks use in an attempt to disparage us that better not be heard. You know, one of the things Lydia rightfully brought up is the word "retard". Now "retard" is a perfectly good word if you're talking about fruit spoilage or if you're talking about pauses within music, but if you're talking about another human being, folks with intellectual disabilities have said "we don't want that to be used in reference to us". So if people with intellectual disabilities don't like that word, then the rest of us basically need to get with the program and shut up. That's what it means--it means having respect for those individuals who are most directly affected by that--who are most harmed by that.

Femi: Lydia.

Lydia: And then you also have words like "gimp" or "cripple" that are generally considered not acceptable to be used by people who aren't part of the community. But you'll find on a lot of radical disability justice writings, whether those are essays, people in academia, or even the emerging disability movement in social media, where people proudly refer to themselves as things like "gimps" and "crips" or "cripples". And those are terms that, whether or not people in the outside community will generally recognize as conveying these sort of derogatory meanings, that get them labeled in this category of disability slurs, have been reclaimed by some people who are directly affected by them. So there's also that perspective to consider as well.

Malika: Well, Gregor, I want your thoughts on this, but first I want to dip into the community here because they have lots to say about language. On Reddit, there's a comment: " 'Differently-abled' is super offensive to me. There are things that I cannot do. I am disabled, full stop." And on Twitter, Toby says: "If the word doesn't apply to you, you don't get to argue about how it doesn't offend you. You are not the judge. That's ableism." And he's referring to words, as we mentioned: "lame", "crazy", words like that. What are your thoughts on words--and I know that you've spoken about language that's not necessarily equal for all. You've spoken about biased language--tell us what you think about that.

Gregor Wolbring: Well, I think in the pre-interview, I gave the example of "confined to the wheelchair" we use all the time. Right? Having certain--I mean, understanding that you're supposed to walk and that's a liberation. But of course the analogy is I can get out more, out of my wheelchair, than people can get out of their legs, but they would never define themselves as "confined to their legs". Right? I mean, certain groups will make up what they see as the norm, and then they come up with "confinement" and so on. And it's in essence, I mean essentially what certain people--wheelchair is a liberation tool to many. By labeling it as a "confinement"--right?--you take away--right?--the usefulness of a tool. I mean, for the so-called "able-legged" / "abled" people, I mean, we could say that public transportation is a tool, right? And their right to get rid of the confinement to the legs because the leg can only do so much. So we could go on and on. It's always subjective and whoever draws, but everyone is confined to something and everyone uses a certain tool to get out of the confinement.

Femi: Lawrence?

Lawrence: Yeah, you liberate the language, you liberate the people, in some ways. You change the way of thinking around it. You know, I was part of a dance company that called itself "Gimp", that sold out shows in New Your City, the ICA in Boston, was in L.A., Chicago--twice, went to Nepal, and opened the double in Dance Festival. And part of the interesting thing about doing that show was we wanted the word "gimp" to be a preemptive strike. We knew that if we called ourselves "gimp", that would open up the conversation. It would give people an opportunity to say, "why did they do that?" It also gives you chance to go to your dictionary and to learn a little bit. Some might consider the word "gimp" a pejorative, but if you look it up you also find that in the OEM, it's called--it's known also--a definition for "fighting spirit" and "vigor". It's a definition for "interwoven fabric". If you're in Ireland, it means you've got a "gimp" for something--you want to do it really bad, like play music.

Femi: You really studied up on all--[breaks into laughter].

Lawrence: You gotta know what you're talking about, or you don't say it. You know, in England, it has sexual connotations that I won't get into here, but if you want to understand what a word means, you oughta understand how it means to different communities. And if I was gonna be labeled with something, "one who limps or hobbles with fighting spirit or vigor"--I can live with that.

Femi: See, here's the confusing bit. Lydia tells me that "gimp" is offensive. You called your dance group "Gimp". I'm just trying to be progressive and cool and down with everything and then I don't know what to say anymore.

Lawrence: Well, and I think--

Lydia: --Well, it's really important to remember that it's the people who are affected by that term who get to determine when and whether it's okay to be used. And so I said that in communities outside disability, words like "gimp" are generally considered offensive. But a lot of people who might be labeled by that term, like Lawrence was just talking about, have chosen to reclaim that and that's a very powerful political action.

Lawrence: And the thing is, only I can reclaim that, right? Somebody who doesn't limp or hobble, or who doesn't fall into one of those categories, can't just say "I really like that word and I want to use it!" I think it depends on your relationship to it, is really important.

Malika: Interesting comment here--

Lydia: Lawrence can reclaim that word. I don't; you don't, but Lawrence does and that's why I said it's such a political action when someone says "I'm gonna take this word that has been used historically as a weapon, that has been used to dehumanize, and I'm going to turn it around and use it as a marker of my identity". That is a very powerful political statement to make.

Malika: And Lydia, actually, I want you to elaborate on that. Based on this comment from Ron Juice on Reddit, he says: "I work and volunteer with a large number and variety of disabilities, and the person who has the disability is rarely as offended as the bystanders, by the language used." And a follow-up on Twitter, Jen Beijing says: "Actually the word 'disabled' itself builds in a stigma that some people are unable to do things that others can"--and that's speaking to something that Gregor said a little bit earlier, but Lydia, can you elaborate on, you know, reclaiming the word "disabled"? It's--you're taking away the stigma by claiming it.

Lydia: There's two things to say here. The first one is that, regardless of whether someone is already considered to have a disability or not, there's always going to be a lot of things that some people can do that others can't. I can't go to Carnegie Hall and play a concert there. I just can't--I don't have that skill. I can't go and join the NBA and become a professional basketball player; I don't have that skill. There's some things that people can do that other people can't, that we don't think in terms of disability, and that's just--that is a fact. Now, the other half of this is that the word "disabled" does have this history--it does have this very literal meaning of "something that is incapable; something that is unusable, or something that is--has absolutely no potential to be able to do anything". That's just the literal meaning of this. You talk about a car on the side of the road being "disabled", meaning it's not going anywhere. It's not functional, in any way whatsoever. That's the term that's used. But, much like the term "queer" has been reclaimed, largely by members of that community, even though the word "queer" was originally meant as a pejorative--it's originally used as a derogatory term--to this day, there are people who belong to various communities like gay or lesbian or bi or any other number of deviant sexualities, who don't particularly like the term "queer" because of its history, of these kind of negative connotations, it is a term that the community by and large has chosen to embrace. Say, "well this is a term that has been used to hurt us". It is a term that does have a very literal negative meaning. It means "something that is weird or freakish" and has kind of a connotation of witchcraft--

Femi: Right.

Lydia: --which in a society that was dominated by Christian thought, is a very--considered to be an evil thing. It is one that is now used because the community's decided "this is a term that we're going to reclaim; we're going to politicize this and use this term to express our pride in our identity" [continues speaking, inaudible because of overlap]

Lawrence: I think--I think what else we have to consider--

Femi: --one sec, Lydia, just finish your sentence 'cause Lawrence is bursting to get into the conversation--

Lydia: --it's, I mean, it's along the same lines. When we say that we are disabled, we are both acknowledgizing--sorry--we are both acknowledging that a prejudice that does exist in society towards us--

Femi: Right.

Lydia: --but that we're also reclaiming and staking a claim in that part of our identity.

Femi: Okay, so we're going to go to Lawrence, and then Tommy--I know it's very unusual for Tommy to be quiet for this long [laughter] so we'll go back to Tommy in a second.

Lawrence: I don't want to injure his spleen at all. He's got enough cred as it is. [laughter] I just wanted to say, it depends on what definition of "disabled" you're using. You know, the moldy, dusty old medical model of disability says that disability is something that has to be cut out, that has to be cured, that has to be repaired. Now, that dates back, you know, 100 years. But we also have the social model of disability that I alluded to earlier. "It's not my fault you didn't think of me when you built the building and didn't put in a wheelchair ramp." So that social model says "I'm not disabled by my impairment; I'm not disabled by having cerebral palsy, as much as I'm disabled by your inability or your unwillingness to think about my needs, when looking at all of what happens to be factored into society." Who's included, who's sitting at the table, and who's not? I think we need to consider that. There're also cultural models of disability. Right now, in Chicago, Illinois, there's the Body of Work Conference--eleven days--artists, dancers, performers, all with disabilities, onstage, putting it out there, up front, in their own terms, in their own ways, you know? That's a cultural model of disability that is evolving. So I think when we talk about "what is disabled?" or "what is disability?", I think you have to ask, "well, who are you talking to?" and "in which context are you using that word?"

Femi: So Tommy, it's just just a short leap from language to stereotypes. And one of the things you do is just burst stereotypes, every moment you get. What do people assume that you are, because you're blind?
Tommy: Well, they figure that I can't--you know, I don't know, see 'cause I've done all kinds of jobs in my life where I've broken the stereotype. For example, I was a traffic reporter on the radio for a long, long time. I'm the Blind Film Critic. I have an instagram account. I take photographs all the time. I love it--I love doing things that I'm not supposed to do. And, you know, as far as language goes, it's [laughing] I don't know, I'm just blind! I sorta--you know what's funny to me is to hear people trip over themselves to figure out what to call me, you know? It's just blind, it's cool, I mean really you can call me whatever you like. You know, like I said earlier, it's still the same to me.

Femi: Professor, when it comes to stereotypes, and your field where you're teaching people about disability, what are the most prevalent that you would really like a moment to just burst if you could?

Gregor: Well I'm actually more into that language we use is, I mean, very fuzzy, right? I mean, I tend to use "disability" only to cover the area of social reaction towards everyone else. In the body, we should use a different language, because like learning disability, you have two options, for example. You can a) say it's a "learning impairment", which is a medical model, right? But the body is the focus. You can say "learning variation"--you learn differently--also the body is still the focus, or the mind. It's a social model, but you could also say "I'm discriminated by how I learn" and that's what "disabled" means. Right? So, I actually prefer to totally just entangle that and have "disability" only used for the social reaction and then use other terms if they want to talk about the body. So people really have an understanding what they're really talking about when they use the term like "disability". Do they talk about the body, and its deviance or variation, or do they talk about the social discrimination?

Malika: Well, speaking of social discrimination, our community has ways to kind of combat that, and bust the stereotypes. We have a video comment from filmmaker Austin Chapman. Have a listen:

[embedded video]

[background echo with mic feedback, Austin Chapman's voice]

[inaudible] I've been taught to fill in the blanks a lot, so it's made me more perceptive to what's going on, and also I'm much more of a visual thinker, and [inaudible] so I see the world in visual form. I see the world before I even know who the people are or what they're talking about and then I will try to translate that vision into [inaudible] as well as I can, with [sound fades out to end of embedded video clip]

Malika: So Lawrence, he says being deaf basically benefits his filmmaking. Is this helping to start the conversation?

Lawrence: I think it does, because we--people often think--the knee-jerk reaction is to think of disability as a deficit--it's something that you're lacking. But for a filmmaker, it made him more perceptive of what he was saying, what the visual space would be. Right? So in his--in that case, it's a benefit to the work that he's doing. I think many of us would say if we didn't have the disabilities that we have--if I didn't grow up with cerebral palsy, for example--I wouldn't have the insights, the experiences, the kind of understanding around these issues that sort of woke me up to say "I have to fight for it". And I think that, you know, if you take that away from me, I become somebody else, right? It's akin to saying, would you say to Martin Luther King Jr., "tell you what, I'll give you a pill; you'll wake up in the morning tomorrow and you'll be a white guy--that'll take care of discrimination!" That's not the core of the issue, right? The core of the issue is how people are being treated. If you do something to quote-unquote fix me, you can ask "what do I gain?" but what you're not asking is what I lose, and that interim, and I think that's what ableism is really about.

Femi: Starting with Tommy, and I'm going to go back to you, Tommy, because people are going to be watching these conversations. They see the passion--they see there's an issue, but they're not too sure what to do about it. And you're great at just unpacking and making--making the whole idea of disability a lot more approachable.

[poor phone connection]

Tommy: Yeah, I think you--

Femi: What--how should we end this part of our conversation, before we go to the post-show?
[phone connection returns to normal]

Tommy: I don't think--I think the thing you need to do is to just not be afraid. Don't be scared; ask anything you like. I don't know if I can speak for everybody else but I don't think it would hurt us by asking us, you know, just, any random question you want. I mean, that's what we do on the Tommy Edison Experience channel. I mean, I've answered questions about all sorts of things--about technology, about crossing the street, you know, people are just fa--they want to know how I get dressed in the morning, you know? People are interested in knowing about all sorts of things and I--I want to tell you about all of it. So that you're not afraid, and that you can, you know, just walk up and just treat me like anybody else.

Femi: Right. If you want to know how Tommy gets dressed in the morning, there's only one place to find that out, that's: stream.aljazeera.com. Yes! No question is too personal or intimate. This conversation has only just got started. There's much more to come. From Lawrence Carter-Long, he's a long-time disability advocate. From Lydia Brown, she's a student activist and also the blog "Autistic Hoya". From Tommy Edison, you just heard from him; he's the Blind Film Critic. And also Gregor Wolbring, he's professor at the University of Calgary. To be continued in one or two minutes' time.

Femi: Meanwhile, on the next show, racial tensions in South Korea. [electronica music in background] Is the country facing an identity crisis, as it deals with an influx of immigrants? Some South Koreans are not particularly happy about the way their country is changing. More on that tomorrow. The post-show's next, at stream.aljazeera.com. See you online!

[electronica music comes to the forefront, prominent beat, continues for awhile before fading into silence]

Femi: Hello again, this is the Stream's online post-show, and we're talking about ableism, or the discrimination against people with disabilities. On set with us today: Lawrence Carter-Long, a disability advocate. Via Skype in Connecticut, Tommy Edison, the man behind the Blind Film Critic and the Tommy Edison Experience. In the Google Plus hangout, Gregor Wolbring. He's professor at the University of Calgary, and he teaches disability studies. And Lydia Brown, a student activist and author of the blog "Autistic Hoya". I think it's about twenty seconds between the main show and the post-show, and in that twenty seconds, Lawrence said, "I know what we have to talk about next!" What is that, Lawrence?

Lawrence: Well, I want to talk about what is ableism? People, you know, we talk about what disability is but let's talk about ableism itself. Paul Forziano and Hava Samuels, a couple in Long Island, New York. They both have Down's Syndrome. They got married--they can't live together. Why can't they live together? Because the group homes that they're in--they're segregated. One for guys, one for gals. Nobody in the system that thought of how they're gonna do supports and services for people with intellectual disabilities thought about people with intellectual disabilities falling in love, wanting to have their lives. And so now as a result of that, they can't live together like everyone else kind of takes for granted when they got married, right? There's a young man named Hassani Campbell, five-years-old, Richmond, California. He disappeared. It--it looked like he was possibly killed by a family member. Five years ago, no police investigation, right? Robert Saylor, 26 years-old, Maryland, went to the movie theater to watch a movie like anybody else does. He was killed by three rent-a-cops who crushed his larynx. He was calling out for his mother when he died. The medical examiners said it was a homicide, but there was no criminal investigation. When you want to talk about the dark side of ableism, this is how it impacts people.

Femi: So people are watching this, and they're empathizing and then they don't know what to do. What do they do?

Lawrence: I think what they have to do is 1) educate themselves, go to get information from the National Council on Disability, the federal agency that recommends disability policy to other federal agencies, the President, and to Congress. Educate yourself about the issues. Look around you, understand that you don't have to be the person with the disability to have disability affect you. Your mother's hips start going out; the sight starts to go; she's in the club. Superman falls off the horse--he's in the club. More and more kids being born with Down's Syndrome and autism--they're in the club. Soldiers coming back from Iraq and Afghanistan, missing limbs, surviving injuries people never survived before--they're in the club. You want to continue to go to the movies with them. You want to go out to eat with them. You want to go out to the park, the national monuments, with them. You can't do that because of ableism, and that's part of the problem. We need to change the paradigm; we need to not only--you know, there's this whole notion of "nothing about us without us" when you're talking about disability--I think we need to upgrade that. We need to talk about "nothing without us", period, 'cause it could all be about us at some times, you know? It assumes that there are some things that aren't about us, and I think that's not true. As we look at the population, 57 million Americans just here in the States have disabilities, but it's always thought of as "those people"--yet disability's the only minority that any of us can join in an instant [snapping fingers]. But it's not thought about that way. We don't plan for it, and people are left out of the equation.

Malika: Fantastic way to put it, and Gregor, I want you to pick up with that based on this tweet from Katherine, who pretty much agrees with what Lawrence just said. She says, "Ableism is ignoring the structural advantages given to some bodies and denied to others." Can you talk to us about what some of those structural barriers are, that many of us don't even think about?

Gregor: Yes, I actually want to go further, because everyone experiences a certain form of ableism. We for example use cognitive abilities to justify racism, right? I mean many of us still know the book "Bell Curve", right?

Malika: Right.

Gregor: Where in essence it was said we shouldn't--we don't have to do anything in our cities for people, right? I mean with certain ethnic backgrounds, because "they're just not as cognitive-able". So, one thing I want people to understand is that ableism is, I mean, developed as a concept was in the disability community, but has much broader applications. It's used in so many different discourses. We have an obsession with competitiveness or consumerism, or you can go on. And all of that's shaped decisions and, right? And so we are actually--I normally say we are the--we are the ones who actually have a discourse which can be applied to nearly every contemporary problem the social structure is facing today. And the biggest problem people can make and often make is that "oh it's a disability discourse, it's an 'other' so it doesn't impact me". But I mean, ability expectations are constantly used for political purposes, right? And to judge each other. And so this discourse is much broader and so they can learn a lot from us to use the same discourse, the same concept, to apply to all kinds of different areas.

Femi: Lydia, we've described you as a student activist. You can't be an activist without having a very good idea of what you want to be different. Can you share, I suppose, the single one thing you think, "this would make life better for people with disabilities"?

Lydia: For one thing--

Femi: --Is it a mindset change?

Lydia: Yeah, fundamentally all of it comes back to, not even just an individual mindset change, but you have to look at this from a macro standpoint. Like, when we talk about disability from a medical model, what we're doing is we're individualizing disability. We're saying a problem is located in an individual person's body. And oftentimes when people talk about changing attitudes, they're doing the exact same thing, but in reverse. They're talking about locating the problem within the mindsets of individual people. What we really need to be looking at is hegemonic ableism. That is, ableism as an oppressive system that is institutionalized into our culture, into our society, into our politics, so that ideas about what it means to be "be disabled", what it means to "act disabled", what it means for society to have to deal with the so-called "problem of disability", are predicated on certain notions of what disability is, that are so well-entwined into society that they're thought of as natural and normal, when in fact they're not. They're entirely constructions. Going back to this idea that Lawrence has been taking about, about a social model. But it goes much broader than individual people--it's embedded into the very fabric of society and that's where we have to start, is by addressing disability as a cultural phenomenon.

Malika: Well there's a whole other layer here, Lydia, that I'd like you to address. We have a twitter comment from Rebecca, who says one of the things that she wants to clear up is that "only physical disabilities are real" and that's one of the biggest misconceptions, she says, people have. And there's a video comment along those same lines, have a listen:

[embedded video clip]

[Cara's voice] I'm Cara Liebowitz, and I'd like to discuss ableism against those with psychiatric conditions. In the wake of such tragedies as the Newtown shootings and the Boston bombings, there's an outpouring of hatred against the mentally ill. People want to believe that only someone who is "crazy" can commit such acts because that creates a safe "us and them" divide. However, this creates fear and stigma. As someone with a psychiatric condition as well as a physical disability, I am weary of this [inaudible] and fear I will be reduced to a caricature of a violent criminal.

Malika: Lydia, your thoughts?

Lydia: It's an incredibly important issue to discuss because I come from a community that's not traditionally considered to be "visibly" disabled. There's actually a really good thesis that a friend of mine graduating this semester wrote, about the binarism between visible and invisible disabilities, which are basically concepts that sometimes someone's disability is something that you can see. So, for example, if someone is carrying a thin white cane or if they're using a wheelchair, you can generally assume that they are disabled, whereas in other cases you may not know. And in many cases, since I'm a person and I'm--my disability's generally not apparent because I'm autistic--I have other disabilities that you don't necessarily know about just by looking at me in any given situation. You might, if you know what to look for.

Malika: Right.

Lydia: Oftentimes, if I say to someone that I'm disabled, or even if I'm giving a public speech somewhere, people will question my competence or they will question my legitimacy because I do not meet certain preconceptions of what it means to "look disabled".

Femi: Okay.

Lydia: The entire idea of disability is predicated on the assumption that you can "look disabled", that there's something that "signifies" that you are disabled, when in fact that might not be true.

Femi: We just have time to do what I promised you in the main show, which was to talk to Tommy about how he got dressed this morning. [Tommy laughing] Tommy, I'm scared to even ask this question. We are being broadcast live right now. How did you get dressed this morning?

Tommy: You know, I gotta be honest. I put my pants on one leg at a time! [laughing] No, I--[Femi and Tommy both laughing]--no, you know, I just um, like I kind of know--well, I think my mother taught me as a child, that she probably regrets to this day--is that everything goes with blue jeans. And that was really helpful to me. So that's been--and if I'm going to wear something a little bit fancier like this, you know, I know where these shirts are and I know what to, you know--I put them all in the same order so I just grab one.

Femi: Beautiful. Nice job, by the way, you look great. Thank you very much to Tommy Edison, the Blind Film Critic. Gregor Wolbring, professor at the University of Calgary. Lawrence Carter-Long, a long-time disability advocate. Lydia Brown, who's a student activist and author of the blog "Autistic Hoya", to Malika and all of the community, thank you for being part of this program. On the next show, we'll look at the growing racial tensions in South Korea and how the country's dealing with its immigrant population. Until then, we will see you online.

[electronica music] [end of video]

21 May 2013

Ordinary Lives

The other day, I stumbled across a paper I wrote in fall 2009 for my eleventh grade health class on twice-exceptional students with Asperger's syndrome. The paper, which received a grade in the A range, spends a lot of time discussing the position of students in mainstream education who are labeled both gifted and Asperger's.

Right now, it's a reminder of how detached I was at the time from the broader Autistic community. There's the tiring repetition of "Asperger's" without reference to the entire community of autistics.

And at the end, there's this sentence about how students with Asperger's might be the most capable future leaders -- borderline Aspie supremacy there, though couched in much more politically correct language.

I'd forgotten that I'd written that.

But there are a lot of autistics who wouldn't, for whatever reason, qualify for the giftedness label. There are a lot of autistics in mainstream educational settings who wouldn't have received the Asperger's diagnostic label. There are a lot of autistics entirely excluded from mainstream educational settings, let alone truly inclusive ones.

And while there will be (and are now, and have been) autistic visionaries, autistic pioneers, autistic inventors, autistic writers, autistic thinkers, autistic artists, autistic politicians -- indeed, autistic leaders in every arena of public life -- there will be (and are now, and have been) so many more autistics whose dreams don't necessarily include fame, whose identities aren't intricately wedded to public acknowledgement.

So many more of us simply want to live ordinary lives.

We're not in the spotlight, and that's fine.

We're not anyone's inspiration, except maybe our (literal) children's, and that's how it should be.

When I demand equal access, equal opportunity, equal rights, I'm not insisting on my superiority, innate or acquired. I don't want special treatment. I want to see the removal of cultural paradigms about what types of bodies and minds should be valued and what types of bodies and minds should be deigned for marginalization. I don't want a world that advantages me over you. I want a world where oppressive systems that ultimately hurt everyone have been overcome, dismantled.

08 May 2013

What is a shiny Aspie?

I use this term, but I haven't found a good definition of it anywhere online (maybe I didn't search hard enough if one exists?) so here's a brief explanation:

A shiny Aspie is an autistic person (who frequently identifies themself as a person with autism, a person on the spectrum, a person with high-functioning autism/HFA, a person with Asperger's, or, as the name implies, an Aspie) who strives to achieve normative "success" within a conventional model (i.e. dating, going to college, having a job, marrying, etc.) while appearing as non-disabled as possible as much as possible. They are routinely tokenized by more mainstream autism and disability organizations, and often pride themselves on learning "skills" like small talk, eye contact, and not stimming in public. Conversely, they may claim to be very proud of their neurological wiring, but simultaneously believe that "those poor low-functioning people with autism" should be cured. They may be prone to writing inspiration porn style autobiographies or blogs, and easily fulfilling the model of the self-narrating zoo exhibit.

The term shiny Aspie is also sometimes used as a pejorative to refer to any proponent of neurodiversity. With this use, it implies that anyone who opposes a cure for autism is "just a high-functioning person with Asperger's."

Things to know.