29 September 2014

This is What the Empty Room Means

Today, the Georgetown University Center for Student Engagement (formerly known as the Center for Student Programs) hosted a Lunch & Learn training session aimed at student organization leadership. The goal of these trainings is to provide student leaders with knowledge and skills to assist them in running a student organization. Topics could range from strategies for bringing in outside speakers to budgeting for programs or partnering with other student groups. Today's training was to be on accessible and inclusive event planning.

About a month ago, CSE asked if I would be willing to present during a training on accessibility in event planning. I said yes, enthusiastically yes. The outline for the event included an introduction from CSE, a presentation from our disability support services office on Georgetown's policies for accommodation requests, and a presentation from me about the importance of accessibility and inclusion, as well as an overview of the great diversity of possible alterations and accommodations that planners might consider when developing an activity or program.

I arrived on campus today to find the CSE person and the disability services person sitting at one table of eight arranged to form a large square. From the other end of the table, I could smell the fresh pizza in three boxes beside three crates of different types of soda. The tables were clean and polished, so white and bright they made a stark contrast with the muted hardwood floor. The room could easily hold over 100 people, and around 30 or 40 at the tables in the arrangement we had.

But there was no one there. Not one student organization sent even a single representative to attend the training. CSE had received no RSVPs in advance (though they weren't required), and there were absolutely no attendees trickling in even as the clock turned past 12:30.

Photo: Me wearing a white button-down dress shirt and khakis, standing alone inside the Herman Meeting Room with several tables and chairs inside the Healy Family Student Center.

The room was vast and I was small. I was alone in an empty room.

Nothing demonstrates more clearly the utter disregard that disabled people face every day at Georgetown than this. That of literally hundreds of student organizations with hundreds (possibly even creeping into the low thousands) of students involved on their boards or other leadership positions, not even one person deemed it worth their while to learn about access and inclusion.

Of course I recognize that there are many legitimate reasons that people can't attend midday trainings. They have work; they have classes; they have prior obligations; something comes up at the last minute; they didn't know about the specific event. But even if you make the generous assumption that 75% of all students involved in leadership with some or another club would have been unable to attend for some such reason, let's say the remaining 25% could have come and either knew about it or could have been told by someone else in their club's leadership about it. And no one came. How plausible is it that an event run by CSE, the administrative office responsible for oversight of all student organizations, is somehow off the radar of every single club on campus? That every single student involved in any leadership position whatsoever is simultaneously unavailable to attend a one-hour training?

It's not deliberate malice or cold contempt. It's casual indifference.

It takes very little to drive home just how little we matter in the grand scheme of things. And this is what the empty room means. The empty room means that our existence continues to be largely unacknowledged. The empty room means that our ability to participate fully in campus life isn't worth anyone's time. The empty room means that when we talk about improving conditions for disabled people, it's little more than lip service. The empty room means that no one cared enough to figure out how to go or send someone else in their stead. The empty room means that we don't matter. The empty room means another reminder of that fact, clawing into our consciences until we can't forget it for even one second, one brief slip of time.

Georgetown never fails to disappoint me. I attend an elite educational institution that has literally no excuse whatsoever to perpetuate inaccessible environments. Yet for all the talk of cura personalis, community in diversity, being men and women for others ... we continually fail to show even the most minimal concern for the wellbeing or meaningful inclusion of a particularly invisible community on the margins of campus life. The empty room means that the road ahead will be tortuous and long, that my work will never be done, that an entire collective of seven thousand-odd students, and thousands more faculty and staff, every one of us, remain complicit in this complicated system of ableism.

The empty room means that our fight is less against willful hate and more against the easy ignorance cloaked in the privilege of never having to live a disabled experience -- the privilege of never being guilted and shamed into going to an event that you lost the spoons for but had requested an interpreter for beforehand -- the privilege of never having to decide days in advance whether you will go to an event or not -- the privilege of never having to wonder whether you'll be able to access the handouts, presentation slides, or speech of the presenter -- the privilege of not worrying whether other attendees' perfumed products will induce an allergic reaction, meltdown, or physical illness -- the privilege of not sitting on edge in case something triggers a seizure -- the privilege of not thinking about whether something will surprise you by triggering a panic, anxiety, or PTSD attack -- the privilege of not having to think about whether you can even get into the fucking building -- the privilege of being able to go to any event you like, anywhere, with little difficulty or inconvenience except perhaps finding parking --

The empty room means that this state of affairs, a state of affairs in which our completely avoidable and unnecessary yet routine exclusion from programming on campus is simply ordinary.

Author's edit: Since 2012, I have been working in various ways to advance disability justice at Georgetown. I formed a committee of students advocating for the creation of a Disability Cultural Center. I am the first person ever to serve in GUSA (our student government) doing work on disability within the diversity section, and am currently serving a second consecutive term in that role. I have organized several events on different disability rights topics. I'm collaborating with faculty who are proposing creation of a Disability Studies minor. I am agitating all the time for better physical accessibility and accommodations policies for students with disabilities. I've interviewed dozens of people with connections to the university, past and present, on their experiences while disabled. Back in January 2014, I organized a conversation under hashtag #BDGU (Being Disabled at Georgetown University) in the footsteps of other such conversations on experiences of different racialized groups on elite college campuses.

I'm currently organizing a Lecture & Performance Series on Disability Justice. The first event was September 23, when Kassiane Sibley came to campus to discuss abuse of disabled people by caregivers/family members. The next event is October 21 and 22, with Leroy Moore from Krip Hop Nation and Sins Invalid, performing and speaking on police brutality against disabled people, especially disabled people of color.

So there has been progress, just very incremental and largely invisible to the larger community.

04 September 2014

Letter to a Stranger

Hello. You may or may not ever read this letter, but as much as I'm (perhaps irrationally) afraid that you'll stumble across it, part of me hopes that you do indeed find it and read it and think for a long, long time about it.

The way we met was so common, so everyday, so ordinary that it would be easy to forget. I was sitting on the stairs with my friend eating ice cream and you were about to go up those stairs. So we moved to give you a path, and I made a brief quip about not knowing where a certain state is on the map. It's a normal social thing to say, comments like, "Just trying to get a snack before my fifteen is over," or "Really excited about the Patriots game tonight," or "Wow, I almost forgot to get my phone before leaving." And most folks will reply quickly, say something like, "Good luck!" or "Yeah, I hope they win," or "Hey, you could always carry it in your briefcase," and then they'd move on and you'd move on and the entire interaction would be over in around thirty seconds.

You decided right then and there that because I didn't know where this state was, I must obviously be from outside the country. You asked me where I was born and if I was born in the U.S. When I told you I wasn't, you were almost satisfied with that answer -- assuming that I'm foreign and so it's acceptable for me not to know where this state is on the map -- but then you asked when I came here, and I told you I was one. At that point your condescension started erasing what small amount of social nicety you might have had at the start. You started talking to me like I must know nothing at all, like I'm oblivious to everything and ignorant about everything, just because I've lived in the U.S. most of my life and somehow don't know where this one damn state is on the map.

But that's not even the half of it. That was warm-up for what you did next.

Somehow or other, the topic of what I do came up, and I mentioned that I work in disability rights and public policy advocacy. (Fancy schmancy way of saying, I go to people in power and try to get them to change the way things are so they'll be better for us disabled folks.) You asked me why I was so involved in disability, and I told you, like I tell anyone who asks this (very tired) question, I'm disabled and so are most of my friends and colleagues.

For the next twenty minutes or so (hell, it might have even been closer to thirty), you decided to interrogate me about my experiences, while invalidating them, delegitimizing them, erasing them, individualizing them (and I don't mean that in the positive way), and outright mocking them. Yes, I watched you rolling your eyes at me when I decided to suck it up and answer your questions. And you want to know why I stayed there and kept letting the conversation (if you can call it that) continue? Because I believe in cultivating allies, in raising awareness, in developing public conscious of ableism and disability justice and neurodiversity. Because I'd like to think that most strangers, if ignorant at first, are willing to learn and that if they ask questions it's because they're coming from a place of wanting to understand.

Instead, you went full-blown self-narrating zoo exhibit and kept pushing me to explain what it means that I'm autistic, how my autism manifests, all the way down to insisting that I explain my thought processes. In case you're wondering (though I very sincerely doubt it), my thought processes are pretty private stuff.

You were arrogant as you rolled your eyes at me, conveying quite clearly that you believed hardly anything I was saying and in fact probably assumed that I'm incapable of either understanding what it "really" means to be autistic or that I'm not competent enough to accurate interpret my own experiences. You were entitled as you pressed me for personal details about myself, my life, my history, and my neurological fucking processes. You didn't read my signals to stop the line of questioning, to return to discussing my work or my ideas but instead decided that my innermost thoughts were suddenly yours to examine and inspect to your own invasive curiosity while simultaneously dismissing everything that I said as fabrication, delusional, inaccurate, or otherwise symptomatic of a defective mind.

It was so obvious that you refused to so much as entertain the possibility that something I said might be valid or relevant or right -- whether about existing and new paradigms of disability, or about my own personal experiences -- that I'm surprised, honestly, surprised, that I didn't lose my temper at you. I could have. Easily. Your body language communicated hostility and incredulity; your voice communicated condescension and arrogance; your questions communicated nothing but entitlement and the presumption that you, as a well-educated person, automatically know and understand far more about my own experiences that I do.

Somehow, I was not surprised when you started talking about the Deaf community as a legitimate cultural group because they are a linguistic minority but in the same breath assumed that speech is the most legitimate or highest form of language/communication. Somehow, I was not surprised when you in as many words began to talk down to me about "people who are profoundly autistic" as though I can't possibly be truly autistic and as though those who are labeled "profoundly autistic" don't have agency, don't have voices, don't participate in activism. Somehow, I was not surprised when you eventually turned to interrogate my friend who was with me, to ask if they were also autistic, as though autistics only ever socialize with other autistics (or are only capable of being around other autistics). Somehow, I was not surprised when you insisted on visually observing this friend toe-walk and then made them do it again, like, what, a well-trained dog? Somehow, I was not surprised when you asked me am I good at math -- because all Asians are good at math and all autistics are math savants, so I must be a total genius at math, right?

And you know, it's people like you who say that autistics can't understand nonverbal cues, that autistics can't control their impulses or feelings, that autistics can't communicate with other people, that autistics can't respect other people's boundaries. How ironic is that.

The next time you meet a stranger who makes an offhand comment to you, please respond with another offhand comment and then walk away. (Hint: It's a social skill.)

And I hope that if you ever speak to another autistic person again, you remember that actually, individual people are the experts on their own experiences. Do we know everything about everything? No, we don't. But you need to stop assuming that you somehow know us better than we do ourselves, because where I come from, that's called arrogance, condescension, and general assholery.

I sincerely hope you have a good evening.

26 May 2014

Do Blind People Dream in Color? Transabled/Transblind Commentary

The following article is a commentary on a recent article in the Braille Monitor, "Do Blind People Dream in Color?" The commentary (in bold for sighted folks) is written by Tasha Raella, who has given permission for the below commentary to be printed.

Today, a genderqueer, cisblind friend of mine (let’s call them Kelly) posted the below article from The Braille Monitor to their timeline. I read it, and realized that as a transabled person, I was instantly triggered by it, though I could also see how the article validated Kelly’s perspective. We had a lengthy conversation, in which we openly and honestly shared our views. Our conversation inspired me to write the following commentary. My thoughts are in brackets. Before we proceed, it’s important that I briefly explain some vocabulary.

Transabled or transblind (alternatively, abilityqueer): A term that typically refers to people without disabilities who feel that they need them (e.g. a sighted person who feels like she needs to be blind), but which I also use to refer to myself (a congenitally blind person with limited light perception who identifies as sighted). Transability is not the same as internalized ableism, because my identification with sightedness stems from factors that are unrelated to ableism. I have persistently felt sighted from a very early age, before I was exposed to the detrimental effects of ableism.  My transability is as integral to my identity as   Kelly's non-binary gender identity in a binarist world. when it comes to transness,  identity runs deeper than social conditioning.

 Cisdisabled or cisblind: A blind person who identifies as a blind person. Analogous to cisgender.

Now, on with the commentary.

Article quote:

Do Blind People Dream in Color?
by Erin Jepsen

From the Editor: Sometimes I find myself complaining about the blurring I perceive between opinion and news, about the tendency to elevate the reporter above the events he reports, and about how easily we accept one side of a story without demanding the other side and then some considered discussion of the conflicting points of view. When we carry an investigative piece, the Monitor tries to talk with those who are complaining and those who are the target of the complaints. We certainly do weigh in with our synthesis of what we have been told and have observed, but we also hope to give readers enough information to draw their own conclusions about what has been reported.

What follows is not an investigative piece. It is clearly a strongly held opinion, one that may cause those of us who consider ourselves progressive in the way we think about blindness to question whether we appreciate all that our senses can tell us or whether we simply appreciate having them, poor substitutes though they may be, for the sense of sight.

Raella commentary:

[Here’s the first sign that I identify with the sighted perspective. After reading this paragraph, I felt instantly ashamed for my seeming inability to “appreciate what my senses have to tell me.” I know on some level, I can push myself to get more out of my other senses (to concentrate on what I do perceive, rather than what I don’t), but this takes a great deal of effort and is not automatic, the way it seems to be for some other blind people. This lack of automaticity affects almost every domain of my life. When teaching, for example, it rarely occurs to me to use auditory cues, such as having students say “yes” instead of raising their hands to indicate that they have completed a task. I can learn to use these techniques, but I often need to be reminded of their existence, as if I were someone who had recently lost her sight, rather than someone who has never had it].

Article quote: 

Here is a perspective from the mother of a blind child, a mother who has some sight but considers herself blind and thinks there is much to appreciate in being so:

Raella commentary: 

[Again, the disconcerting       shame because of my lack of appreciation for blindness.]

Article quote: 

Have you ever been asked, “Do blind people dream in color?” I’d like to answer that question, but not in the way you might think. I’d like to say that blind people need to dream more in color, not literally, but metaphorically. Let me explain if I may.

Raella commentary:

[Why must we limit our understanding of color to metaphor? I strongly believe that because colors are basically just vibrations, blind people, if they so wish, can understand them literally, as well as metaphorically.]

Article quote:

A chronic condition exists in our world that desperately needs changing. We have chipped away at it, but still it lurks in our culture, in books, in movies, in conversations, and in unnecessarily limited expectations. We’ll call it “sightism” for lack of a better term, and, quickly defined, it’s the belief that being sighted is fundamentally better than being blind.

Raella commentary:

[Do I feel that being sighted is better than being blind? It’s a complicated question. I guess my best answer is in general, I don’t think one state of being is “better” than the other, but because I experience intense dysphoria as a blind person, being sighted would be “better” for me. Which leaves me wondering: am I a blind person who is sightist? Am I contributing to oppression? My friend Kelly is quick to reassure me that I am not an oppressor, because I’m not reaping the benefits of sighted privilege, but am I? After all, my way of thinking about the importance of visual culture is in alignment with the dominant paradigm. I feel privileged and marginalized at the same time]

Article quote:

Historically, the “medical model of blindness,” as it’s called in academia, is partly to blame. The thinking goes like this: Diseases, illness, or accidents cause blindness, so it is obviously to be combated and cured by the medical community and by research. Eye doctors spend years of study and millions of dollars to learn how to restore sight. Blindness is not an ideal part of the human condition, so its reversal is better than its acceptance. Historical literature paints the blind man as a second-class citizen, unable to support a family, unable to function independently, and devoid of power in any sort of social sense. The Bible also has several examples of Christ restoring sight, which carries with it the assumption that the lives of those so touched will be vastly improved.

Raella commentary:

[I definitely don’t agree with the medical model of blindness, and am conflicted over the vast amount of money researchers are spending on finding cures for various eye conditions. On the one hand, I am selfishly grateful. I want a cure (though I prefer to call it a transition to sightedness). On the other hand, I realize that the majority of congenitally blind people (and a lot of adventitiously blind people as well) do not want such a cure. I think this kind of research is acceptable, as long as researchers are very careful not to assume that every blind person wants to benefit from it.]

Article quote: 

In modern culture we, the politically correct enlightened few, assume we’ve evolved beyond this demeaning form of oppression. Here’s how our modern thinking tends to run: Of course a blind man can work! He’ll simply use his iPhone as a sort of replacement sight and go on with his business. Technology today has advanced so far that we’ll soon have self-driving cars and artificial retinas. Stem cells will likely re-grow entire eyes if put into the right petri dish.

Yes, I’m being facetious, but I wonder if you can spot my point? Replacement eyes. New eyeballs that work. Sight, sight, sight. Valuable—you bet. The end all and be all of human existence—I don’t buy it.

Raella commentary:

[Another sign that I’m reading this article as a sighted person: instead of getting annoyed by this proliferation of sight-replacing or sight-restoring technologies, I get excited by it. Clearly, the author feels that this emphasis on sight-restoring technologies will further support society’s marginalization of blindness and its obsession with the visual. But does this have to be the case? Can’t blind people fight for their rights, and demonstrate that their perspective is valuable, while at the same time, technologies are created for the blind people who wish to transition into sightedness, or to live as sighted part of the time? ? Maybe I’m naïve and idealistic, but I don’t think it is an either/or. When created and used responsibly, technology is all about giving people options.]

Article quote: 

I’ve been told that humans use up to 70 percent of their brains to interpret visual images. (Some literature alleges that 90 percent of learning comes through vision.) I was told this during a vision screening in which my own visual condition was cross-examined. My brain apparently processes visual images incorrectly. It brought into focus for me (sorry about the pun) the trouble the sighted world has with the idea that someone could function normally without that 70 percent of visual input and still have a rich sensory environment. I get it. Simple mathematics dictates that a blind person uses only the 30 percent that remains, right? Well, we all know that isn’t true. The brain is more flexible than that, and, while I don’t buy into the delightful myth of superhuman hearing, a la Daredevil, I do know that the brain appropriates visual processing centers in order to interpret shapes read by the fingers as well as aural input. Echolocation is one example.

Raella commentary:

[Though I of course don’t believe that blind people only use 30% of their brains, I can say that as a transabled person, I am keenly aware of the gaps in my sensory perceptions. I of course have no evidence to back this up, but I suspect that the neural restructuring that happens in most blind people’s brains didn’t happen to the same extent for me. I am more interested in color theory than I am in sculpture or music or anything else that is tactile or auditory. I am definitely good at some tasks that sighted people aren’t (listening to synthesized speech at high speeds, for example.) But it seems like the author is making an assumption that all blind people have a rich and complete sensory experience, and I don’t know if that is the case. I wonder if other blind people can relate to my awareness of having a gap in perception.]

Article quote: 

Still, people have a hard time believing that this is adequate. Even the blind community has a pervasive attitude of sightism running through it. Stick with me here. We’ve been told our whole lives that, while blindness is okay, sight is better, right? The sighted parents receive news that their child will be blind for life, and how do they react? They weep. The child hears them weeping and begins to form an image of her own unfortunate circumstances. This carries through to the undereducated (through no fault of her own) blind adult who cannot hold a job because she has never been expected to ride public transit by herself, the man who never learns to get along with his co-workers without demanding special treatment, and the woman who is incapable of working current technology because her school provided her with technology from 1965. In writing this I’m not shaming us, but I’m pointing out some simple facts. We all know these blind people. We are them.

Raella commentary:

[In my case, I had access to the right technology, and the right education. I had several strong blind adult role models. My mother quickly got over her grief and focused on helping me to become the most successful blind person possible. My father researched sight restoration for me, but I think only because I had expressed an interest in it myself. Clearly, education and familial attitudes are not the only factors that influence whether we identify or disidentify with blindness. I think there is a pronounced difference between the examples Jepsen describes, of blind people who were taught to believe that they couldn’t lead successful lives, and transblind people, who, for whatever reason, are wired for sight.]

Article quote: 

I have low vision. I’ve been denied jobs because the potential employer had known an incompetent blind person and assumed I was also incompetent. There is room for change.

Raella commentary:

[Yes, I agree.]

Article quote: 

Family, acquaintances, and strangers weekly tell me things I should believe about myself and my daughter, who is blind. When she confidently runs around at church during music practice, I invariably have someone tell me that she can surely see better than we think she can. (Uhm, prosthetic eye, anyone?) The underlying assumption that confident movement can be achieved only with sight is unquestioned. When I refute it, amazement and the dreaded word “inspiration” often follows. When she had surgery on her eyes, people asked me if she could then see better. They ask me if they might pray that her sight would be improved. I won’t go into my observations about our faith in the medical system as contrasted with our faith in the Divine. While I do believe in Divine healing, I believe more in Divine guidance, and sometimes we really do walk by faith and not sight. Did you hear me? Not sight. As in, that’s okay.

Raella commentary:

[I read this, and part of me is envious of Jepsen’s daughter’s confidence. I have blind friends that are amazing travelers, and to be honest, I think I’m in as much awe of them as sighted people are, though I definitely would never ever use the I word to describe them. Ick. Also, this paragraph is another example of Jepsen’s chastising and somewhat condescending tone. Kelly said that they doesn’t think Jepsen is saying that blindness is better than sight; she’s merely pointing out sighted culture’s extreme tendency to undervalue blind people’s ways of doing things. If Jepsen is taking an extreme position, Kelly says, it’s only because sighted people take an equally extreme position with regards to blindness. But as a deconstructionist, I’m always on the lookout for dichotomies, and I think Jepsen is unintentionally creating one here. In his article Queer as a Verb , Charlie Glickman invites us to view dichotomies as tensions between sameness and difference, rather than opposing forces. I think that’s what Jepsen is trying to do here, but it isn’t really working for me, because I keep scenting blind superiority.]

Article quote: 

The civil rights movement in our country focused our attention on race. It showed us that people with black skin could be employed if they were allowed to be educated. It showed us that black people were not content to sit at the back of the bus or to be treated as second-class citizens. It showed us that the rusty old “colored” drinking fountain next to the refrigerated “white” drinking fountain would no longer do and that shoehorning black adults into menial labor jobs was no longer acceptable. As a country we discovered that people of color were equal in every way to white people. It took time for this idea to sink in. It took a lot of work. But, for a lot of us, it has finally penetrated our skulls, and, equally important, it has made its way into our hearts—both are required for real awareness and understanding that people are equal, no matter their race.

Now let’s talk about disability. I’m tired of sitting at the back of the bus too. I’m tired of people weeping over blindness. I’m tired of literature equating blindness with death, with sin, with darkness and fear, and with ineptitude. I’m tired of being seen as superhuman or subhuman, and, never oh never, just human. I’m tired of viral videos showing a six-year-old boy stepping off a curb for the very first time with his white cane as if that is a good thing. It’s not a good thing. Eighteen-month-old babies step off curbs for the first time, not six-year-old children. I’m tired of reading about 70 percent unemployment rates for blind adults. I’m tired of Braille charities that “bring light to those in darkness.” Well, excuse me, I’m not in darkness. My visual condition happens to have a little too much light as a matter of fact. I’m tired of raising money to fight against my blindness. I don’t raise money to fight against my brown hair, my five-foot-ten height, or my Caucasian skin. If I raised money to fight my daughter’s African skin, I’d be accused of racism, and my accusers would be right. I don’t need to fight against who I am, and, more than that, fighting against the way I perceive the world robs the world of my own perception and of my own voice and message.

Raella commentary:

[I agree. However, whenever I am mistreated because of my blindness, my tendency is to take it personally, rather than to view the sighted person as ableist. It’s not that I think ableism doesn’t exist. It’s more that my identification with sightedness is so tangible, my expectation that I should be read as sighted so pronounced, that I blame myself. Of course, this way of viewing the situation seems illogical and potentially damaging, which drives home to me that my transability is not something over which I have complete control. When I expressed frustration to Kelly that I was not able to identify with Jepsen’s description of ableism, they said reassuringly, “Of course you wouldn’t. You’re sighted.”

In addition, I think the discourse around “curing” blindness needs to change. Phrases like “fighting blindness” and “suffering from blindness,” though they generate pathos and loosen purse strings, should be excised, because they imply that blindness is inferior to sight. We need to find other ways of talking about blindness research that are not oppressive, while still recognizing that some people may want to transition out of blindness. Another friend with a disability, Valéria M. Souza, ., helped me come to the conclusion that the tools to “cure” blindness are not in it of themselves dangerous; it is the way that the medical establishment wields them that is oppressive.]

Article quote: 

The medical model of blindness is fine as far as it goes. The social model steps a bit further and insists that blindness, when incurable, can become a normal condition of existence and should be accepted as such. Well, that’s all nice, but do I merely accept my daughter’s African skin? By no means! I embrace her beauty. I tell my bi-racial son that his brown skin is gorgeous, which it is. I tell them that their beautiful hair is so much fun. I tell my white children the same. I adore my multi-colored family, and my adoration opens the door for those around me to adore them too.

I draw attention to race only to illustrate a parallel between accepting differences in race and accepting differences in sensory ability. Just as rejecting racism ultimately relies on appreciating one another’s differences, rejecting sightism goes far, far beyond simple acceptance. Merely existing in spite of our blindness isn’t good enough. Secretly wishing we could see won’t cut it. There is a point beyond simply living with our blindness--actually enjoying it. There is a point where we realize that we have a unique perception of the world that sighted people don’t have. This perception adds richness to the tapestry of human existence.

Raella commentary:

[Again, Jepsen seems to be conflating her views with that of all blind people. Not everyone is capable (or desires to) embrace their blindness. By not acknowledging this fact, Jepsen is engaging in (or at least supporting) identity-policing. She is implying that if a blind person refuses to embrace blindness, he or she is contributing to sightism. Philosopher Jose Medina writes that proponents of second-wave feminism defined themselves in opposition to men and valorized “women’s ways” of doing things. I wonder if that is what is going on here; is the disability rights movement undergoing an analogous stage?] I see much potential in writers such as Robert McRure and Eli Claire, whose work is at the intersection of disability and queer studies, though to my knowledge, no one has yet postulated that abilityqueerness is separate from ableism and is a valid identity category.]

Article quote: 

My daughter who is blind has a rich perception that is unique to her and is in no way less than that of her sister who is fully sighted. If I go around telling my blind daughter everything I see and describing the world to her so that her poor pitiful dark world will be just a bit fuller, then I am sending her the subtle message that the things she notices are less meaningful than the things I can (sort of) see. People who tell me I am blessed because of the limited sight I have discount the wonderful things I possess as part of my blind self. I want to tell them that the unique way that I have always perceived the world is important, even if it is different from the way they perceive it!

Raella commentary:

[But the question is: does Jepsens’s daughter want to hear about the visual world? If she does, then her mother’s description of what she sees will contribute to the richness of her perception, rather than diminish it. Again, I think it is possible to do both: give the blind child an opportunity to engage with visuality, while encouraging and supporting her nonvisual perceptions. As the child grows older, she will be able to make her own decision regarding her relationship with the visual, but that decision can only be made if she has access to information from visual and nonvisual channels.]

Article quote: 

Remember the scene in Dead Poets Society where the teacher stands on his desk to the consternation of his strait-laced, rule-following prep-school pupils? He is trying to get them to see the world in a new way, a different way. He is trying to broaden them. At the end of the movie, the tearjerker scene involves a student standing on his desk, as if to say, “I learned what you were trying to teach. I get it. I’ve changed.”

Guess what? We blind folks were born standing on our desks--or that illness or accident forced us up there. We see the world in a different way. That’s not a bad thing; it’s a wonderful thing. It’s a broadening thing. The world needs us: not to give them inspiration, not by stepping off curbs, but by being ourselves. By experiencing the world in the way that we experience it, by looking at things from a different angle, we enrich the world.

Raella commentary:

[I’m standing on a desk, too! Except instead of teaching sighted people about how I perceive the world differently, I’m declaring my unbounded curiosity about sight. I’m focusing on my similarities to sighted people, rather than my differences, and I think that is just as important and just as subversive as what Jepsen is doing. I’m queering the boundary between blindness and sightedness, not out of a desire to conform, but out of a desire to live my own truth. The poet Hune Margulies writes, “is the bridge/there to embrace together two shores,/or are the shores/
there/to embrace both ends of the bridge?]

Article quote: 

I read an article which said that architecture designed with a blind user in mind ends up being more functional for the general population. In the same way that embracing the beauty of all colors of the races and all of the variety found in the world’s many cultural traditions makes us stronger, so too does embracing our diverse abilities. These must be seen as valid ways of perceiving or navigating the world so that they can bring a richness of experience, a diversity of thought and problem-solving that cannot happen when vision is considered to be the most important of our five senses. We close doors leading to significant human experience when only mobility using two feet is considered, when only hearing is considered, when only neuro-typical ideas are deemed valid.

Raella commentary:

[I consider my transability to be a form of neuroqueerness.]

Article quote: 

This shift in thinking about blindness has to come from the blind community first. For the sighted world to see us as competent, we need to begin seeing ourselves as possessing a truly valid perceptual experience. We need to question the sightism that goes on around us constantly. We need to sit in at the sightist lunch counters and insist that we belong there. We need to appreciate the blind artists who showcase the beauty of our perception to the unaware sighted world. We need to insist that blind actors play blind roles in Hollywood and discontinue the shameful but Oscar-winning blind-face practice that goes on there. We need to keep on working for equal access to education and transportation. We need to push back gently against teachers of the blind who teach reliance on poor sight over learning essential blindness skills.

Raella commentary:

[Note Jepsen’s use of “wee.” Though I agree with many of the causes Jepsen says we must fight for, my dichotomy alarm is still going off. Jepsen is using words like “blind community” and “sighted world,” which, to me, perpetuates an us-versus-them mentality. Kelly says that blind people are not to blame for this dichotomizing, that sighted people are responsible for creating it. Regardless of who is responsible, I worry that if we continue to use this kind of language, we are feeding the dichotomy rather than disrupting it.]

Article quote: 

I’m not discounting the frightening experience of sight loss. Any change like that is bound to be unsettling; I’ve gone through it myself. I’ve gone through the identity shift that rocked the very core of my existence when the person I thought I was is the person I no longer am. I’ve been there. I have. It’s okay. Stepping up onto that desk is scary at first. After a while, though, you find your balance and look around, acknowledging that what you observe is still reality, but reality from a different point of view.

Raella commentary:

[But sometimes, this doesn’t happen for me. Sometimes, I stand up on that desk, and I’m twisted between the me that is blind and the me that drives all her friends around and practices her calligraphy. Though only the former exists on a physical plane, the potentiality of the other me is just as real.]

Article quote: 

Because of the Civil Rights movement, I can adopt and raise black kids to have a wonderful future and embrace them for the color and race they are. I hope that in twenty years my partially sighted and blind children can have as bright a future and be embraced in their families and workplaces for the valuable contributions they make and not merely accepted or accommodated. Like the inimitable Dr. King, I have a dream: just as racism is dying, that sightism and ableism will die the same death, that the medical model will no longer be used as an excuse to discriminate and push us to assume second-class citizenship. I dream that our blind kids will join the ranks of tomorrow’s chemists and doctors and actors and engineers, as well as bricklayers and fast-food workers. I dream that we will never again hear stories of blind parents having children removed by Children’s Protective Services because they are both blind. I dream that inclusive architecture will be standard because the people who directly benefit from that architecture are valuable enough to be worth it. I dream that our children won’t have to spend their energy fighting for equal access to science laboratories but instead can spend their time and energy researching. I have a dream that all Braille teachers not only will read Braille well, but will tell children that learning Braille is as easy as sighted kids learning to read those squiggles and lines they call print. I dream that blind athletes will continue to strive for world records. Not only do I dream for the newsmakers, but I want to see a world in which blind people who want to live quiet, peaceful, non-record-breaking lives without being interrupted by a constant stream of acquaintances calling them inspirational will be free to do so. Let’s dream together, shall we? And then we’ll tell the world of our beautiful, colorful dreams.

Raella commentary:

[Maybe my dreams aren’t so different from Jepsen’s, but here’s what I would add: I dream that blind children will be fully included in art classes, instead of handed a piece of clay and told to work by themselves. I dream that all of us, blind and sighted, will learn that the visual can be accessed through more than just the eyeballs. I dream that while attending Harvard this fall, I will create a system for distinguishing  colors using the fingertips, through a phenomenon called dermo-optical perception. I dream that DOP will become mainstream, and that sighted and blind artists will collaborate and break boundaries. And, above all, I dream that the diverse experiences of all blind people will be celebrated: cisblindness, transblindness, and everything in between.] 

02 May 2014

New Publication: Criptiques Anthology

This past month, the new Criptiques anthology on disability has been published! I'm extremely excited to be featured alongside an array of incredible disabled writers and activists, all compiled by the kickass Caitlin Wood of Where's Lulu?

Here is the anthology's description:
Criptiques is a groundbreaking collection of essays by disabled authors examining the often overlooked, provocative sides of disability. Exploring themes of gender, sexuality, disability/crip culture, identity, ableism and much more, this important anthology provides much needed space for thought-provoking discourse from a highly diverse group of writers. Criptiques takes a cue from the disability rights slogan "Nothing About Us Without Us," illuminating disability experiences from those with firsthand knowledge. Criptiques is for people invested in crip culture, the ones just discovering it, and those completely unfamiliar with the term.

Not convinced? Here is the full table of contents!

  • "Introduction: Criptiques: A Daring Space" by Caitlin Wood
  • "Criplesque" by Elsa S. Henry
  • "Your Mama Wears Drover Boots" by Elizabeth J. "Ibby" Grace
  • "Droolilicious" by Leroy Moore
  • "Waiting" by Anna Hamilton
  • "Disability in an Ableist World" by Lydia Brown
  • "What Should You Call Me? I Get to Decide: Why I'll Never Identify with Person-First Language" by Emily Ladau
  • "Dreams I'll Never Remember" by William Alton
  • "Palsy Skinny: A Mixed-Up, Muddled Journey into Size and Disability" by Cara Liebowitz
  • "Brain Injury, Meet Disability Culture" by Cheryl Green
  • "Going Off the Communication Beaten Path" by Eva Sweeney
  • "The Visual and Political Implications of Using Frida Kahlo and her Artwork to Represent Disability" by Stefanie Snider
  • "Reflection Toward Practice: Some Questions on Disability Justice" by Mia Mingus
  • "The Wholeness Project" by Nitika Raj
  • "The Erasure of Queer Autistic People" by Alyssa Hillary
  • "Take With Food" by Cat Moran
  • "Beauty in Exile" by Riva Lehrer
  • "On Surviving “Little ‘t’ Trauma”" by Nina G. Comedian
  • "Preferred Provider" by Robin M. Tovey
  • "Disability Should Not Equal Poverty" by Danine Spencer
  • "Constant Dissonance: Our Noise is Dangerous" by Kay Ulanday Barrett
  • "What Bodies Do: Meditations on Crip Hatred, Elder Hatred, and the Vulnerable Body" by Rachel Cohen-Rottenberg
  • "On Radical Empathy and Schizophrenia" by Ben G. 
  • "The Reinvention of Self in the Context of Heteronormativity and Ableism" by Jen Rinaldi and Samantha Walsh
  • "Krip Power Through It: Disability Scholarship & Activism Helped Me Resign & Rebuild" by Bethany Stevens

Criptiques is available from Amazon and soon will be available in e-book format, too. Criptiques also has a Facebook page and a homepage at www.criptiques.com with further information.

Image description: Three pictures. Left hand corner is a stack of brown boxes with a blue Criptiques book lying on top. Underneath is a picture of the blue Criptiques book on top of a blue Criptiques shirt and black and white sticker and button. To the right is a large closeup photo of the Criptiques cover. Photo and description from Caitlin Wood.

29 March 2014

Uptown Radio Interview: Autistic People Demand Support As Diagnoses Rise

Live from Amman on Uptown Radio at the Columbia University School of Journalism! (Thanks to s.e. smith for passing my name along!)

This week, I had the pleasure of speaking with Katie Toth from Uptown Radio about the CDC's new report on the rate of autism diagnoses in the United States. You can check out the interview on Uptown Radio's website or the my transcript below! 

KATIE TOTH: A new report from the Centers for Disease Control and Prevention found that diagnoses of autism in children have gone up one-third in the last two years alone but that does -- that is not necessarily a rise in the number of cases. Some experts believe the higher rates reflect a heightened focus on autism by parents, doctors, and teachers that may be resulting in more children getting diagnosed. But the report also highlighted disparities in the number of white children diagnosed as autistic compared with people of color. And while 1 in 42 boys are diagnosed, the number is way lower for girls, 1 in 189. Lydia Brown is a disability advocate and student at Georgetown University who was diagnosed with autism herself at age 13. She points to our society's stereotypes as a possible reason for the disparity.

LYDIA BROWN: There are a lot of prevailing stereotypes about gender to begin with, even when you take autism or disability out of the equation. There are stereotypes about what it means to be a normal boy versus what it means to be a normal girl. If you're a girl or you're a woman, you're more expected to assimilate, to be quieter, to be in the background, and if you don't speak up much, if you're very quiet, that's just considered, oh, you're just being a shy girl. And because of that, a lot of times, characteristics that might stand out in an autistic boy compared to neurotypical boys might be overlooked in autistic girls.

KATIE TOTH: Looking forward, in terms of seeing this rise in diagnoses, what's this going to mean for people in the autistic community?

LYDIA BROWN: Well, moving forward, the study does show that there continue to be a lot of disparities in terms of who is able to access a diagnosis, and while I personally do not believe in using or structuring the medical establishment as the gateway for who can be considered autistic, the reality is that access to services such as the educational system, such as  vocational services, and other developmental disability related services require documentation--meaning a diagnosis on paper. And because of that, it is critically important that we increase access to diagnosis and diagnostic services for communities, particular those that are already underrepresented, as women, those who might be sexual minorities, people of color. Even the most recent numbers that just came out, the 1 in 68 number, white children were 30% more likely to be diagnosed ahead of Black children and the numbers are also fairly low for Hispanic children. For example, we already know that in the United States if you are a person of color, you automatically face enormous societal barriers in the form of structural racism and how it plays out in public policy, and because of that it is critically important to expand access to diagnoses and the availability of diagnostic services because the same communities that are already being hurt in other areas are further harmed when you happen to be autistic as well as a person of color and you're unable to access services because you are not in a position to access a diagnosis in the first place.

KATIE TOTH: You've sort of found a very tight-knit community online. You've been very much an online presence and an advocate. I'm wondering sort of how that support and how that community changed your life?

LYDIA BROWN: Had it not been for the very vibrant presence of the autistic and disabled communities online, I never would have been able to connect not only with people who were like me and shared experiences with me, but also with ideas that were able to politicize my understanding of my identity as an autistic and disabled person.

KATIE TOTH: Thank you so much Lydia.

LYDIA BROWN: You too, thank you very much, have a wonderful day.

KATIE TOTH: Lydia Brown is an autistic disability rights activist. She was named a Champion of Change by the White House in 2013.

12 March 2014

I am autistic, and I am obsessed with violence.

Trigger warning: Discussion of murder, other violence, ableism, various mass shootings, mention of rape, discussion of forced psychiatric treatment, brief description of the JRC, terrorism, 9/11, probably a lot of other triggers.

I am autistic, and I am obsessed with violence.
A response to Andrew Solomon's article about his interviews with Peter Lanza in The New Yorker 

An old man falls to his death from a cliff, staring in horror and despair at his loved one standing on the edge.

This is one of my first memories of playing pretend games with my younger sister.

In other pretend games, I wanted to be a man wrongfully accused of being a spy and then sentenced to death, or sometimes a robber caught by the police and then sent to prison. In preschool, I became obsessed with Disney’s Snow White. One day at school, I gave everyone little clumps of play dough and told them it was poisoned, just like the poisoned apple in the movie. The teacher called my parents.

In second grade, I started a pretend game with my friends where my character drank poisoned water, turned into a demon, and started chasing her children. My first stories, written between kindergarten and sixth grade, involved abandoned children, abusive siblings, poisonings, assassinations, prison escapes, and horrible torture.

In eighth grade, I wrote my first novel. The plotline follows the tyrannical dictator of one country who decides to murder a well-loved official in the country next door, frame someone else for the crime, and then use the distraction as an excuse to invade.

The same year, I read Helter Skelter, the true crime story of the Charles Manson cult murders written by Vincent Bugliosi, who was the prosecutor in the case. When I brought the book to school, one of the teachers took me aside and told me that was inappropriate reading.

When I started high school, I wrote my second novel, which starts with the assassination of the U.S. President by a terrorist group.

Image description: A very young me, fifth grade, sitting in the classroom with my sleeve against my lips, reading a book in the Animorphs series while other books and binders are piled on my desk. Photo by Rebecca Taplin. I'm wearing a school uniform, long sleeve maroon polo shirt, khaki pants. Behind me are shelves with messily arranged binders and notebooks.

After the Virginia Tech shootings by Seung-Hui Cho, Cho’s writing assignments became a huge deal in the media. His two short plays were full of profanity and violence. I read them when one news source uploaded copies online.

I didn’t know how to express the feelings I had at the time, but I think I’m beginning to understand now.

This week, The New Yorker ran an exclusive article by Andrew Solomon about his interviews with Peter Lanza, the father of the Sandy Hook shooter. In parts of the article, Solomon lingers on Adam Lanza’s apparent obsession with violence. According to Peter, his son was obsessed with genocide, serial killers, and mass murder. He wrote extremely violent fiction on top of reading extensively about other people’s real violence.

Solomon, who is also the author of the recent nonfiction book Far From The Tree (problematic for other reasons), wonders whether these should have been taken as warning signs. Peter is more direct when he talks about his son and whether his killing spree could have been predicted, and presumably stopped, before it happened.

I read Solomon’s descriptions of Adam, and I was crying because most of what he wrote could have been written about me if you changed the names. When he suggested that Adam’s obsession with reading and writing about extreme violence could have been a warning sign, I became terrified. Not because I’m afraid that people in power will start using that as an excuse for hurting people like me, but because I know they already do and I’m afraid it will happen even more.

Believe me, I understand what it’s like to be desperate for answers, for an explanation, when tragedy happens. While I am not the surviving relative of a high-profile mass murderer, I experience total devastation and complete obsession with finding an explanation in the aftermath of any outbreak of horrible violence. Every time. It’s hard to put the feeling into words, but the phrases that come to mind are ones like these: a thousand punches to the gut, complete frantic overload in my brain, nameless things dismantle.

Like many other autistics, I am deeply empathetic, and easily and often overwhelmed by emotional overload. I experience the emotions of people around me – no matter whether I know them or whether they’re strangers – as though they are my own emotions, and that’s on top of and combined with the ones that came from me first.

I was only eight years old when September 11 happened, but as an American citizen living near Boston, it would have been impossible for the terrorist attacks not to affect me.

I say I understand the desperate, obsessive search for answers because I have lived it.

The events of September 11 lit a fire in me and I became desperate to understand, intellectually and emotionally, just why it happened and what reasons the attackers had when they did it. For the next ten years, I became obsessed with the topic of Islamic-inspired terrorism. If an article, book, or website existed that covered the topic – no matter whose point of view it was from – I read every word with fascination. That interest led me to explore the history and reality of other forms of terrorism, including Christian-inspired terrorism, state-sponsored terrorism, eco-terrorism, just about any kind of terrorism that’s ever been named.

The same interest also led me to explore Islam itself as a religion, as the basis for many cultures and civilizations, and as a social and legal system. At the same time, I also became extremely interested in learning about national security policy, counterterrorism operations, and the role of anti-brown racism and Islamophobia as tools of white supremacy and American imperialism. By the time I was in twelfth grade, I decided that I wanted to study Islamic Studies in college and later go on to study for a PhD focusing on Sufi music in Pakistan.

Right now, I’m an Arabic major studying abroad in Amman, Jordan, and this is a direct result of my long obsession with understanding why and how September 11 happened.

Image description: Me with serious expression wearing a gray t-shirt against a black background, holding both my arms in front of my body. Text that I wrote in black pen says, "I don't understand how many people can hate" in English on one arm and in Arabic on the other arm. Photo by Robert X. Fogarty for the Dear World Project at Georgetown University in March 2012. 

After the Virginia Tech shootings, I read news articles that described Seung-Hui Cho as a socially awkward loner who had been bullied in the past. As much as I empathized with his victims and their living loved ones, I also instinctively empathized with him too.

This doesn’t mean that I’m somehow okay with murder or that I think he’s less guilty or that his crimes should be excused or ignored. It just means that my empathy is not selective, and I don’t think that that’s a bad thing.

Both Peter Lanza and Andrew Solomon said outright that autism shouldn’t be treated as if it’s related to Adam’s killing spree. But that doesn’t change the tone of the article at all, which talks about Adam’s diagnosis and various autistic characteristics in a way that reminds me of a freak show, or a post-mortem zoo exhibit. If the fact that Adam was autistic isn’t related to the fact that he killed twenty-six people, then why spend so much time focusing on his autistic traits in an article that’s mostly about his father’s attempt to figure out why and how this happened?

Plenty of readers will read the disclaimer that autism didn’t play a role in the killing spree, and they’ll roll their eyes or shake their heads or something like that, because they’ll read the same damn article and they’ll ask the same damn question, only their answer will be different. Their conclusion will be, of course it was relevant. Of course it was related. Some people will be aware that they’ve reached that conclusion, and other people will do it subconsciously. The result will be the same, though.

They’ll read about the report from a professional that said Adam was more likely to become a victim, and they’ll laugh. They’ll laugh even though it’s true. Of course, statistics don’t change the fact that he actually became a victimizer, but statistically, overall, people like him and people like me are at such high risk of becoming victims of violence and abuse. That’s true across the board for disabled people, no matter whether we’re talking about autism or mental illness. You don’t have to read academic studies to know that (though the studies do exist) because if you live in a society where one way of existing is normal and everything else is treated as less than, anyone who falls into that “everything else” category is going to be more vulnerable. That’s the way systems of power work.

Solomon may have intended to try to humanize both Peter and Adam in his article. He probably intended to do the same thing with the many different types of people he wrote about in Far From The Tree. But his intentions don’t change the reality of his writing, which, for me, is completely devastating and completely dehumanizing. And not just for autistics but for people with mental illness too. Autistics got a half-hearted disclaimer that autism isn’t related to violence. People with mental illness got thrown under the bus.

And the best phrase I can think of to describe how he talks in so much detail about Adam’s sensory aversions to sounds and textures is “morbid fascination.” In the course of my activism, I’ve met so many people, most but not all autistic, who could also fit a lot of these descriptions perfectly too.

One of my favorite hobbies is text-based roleplaying, which is basically like writing stories but with other people. Some people treat it more like a competitive game, and other people like to treat it more like a big group writing project better. The roleplays that interest me the most are the ones that explore the same topics that I’m interested in outside roleplay: state violence, terrorism, torture, abuse, human rights violations, rape and other sexual violence, and mass murder.

I’m writing my seventh novel right now. Much of the novel focuses on war crimes and genocide along ethnic and religious lines.

If you didn’t know me, if you read Andrew Solomon’s article and the hundreds of others like it, if you didn’t understand that it’s totally possible to be fascinated and obsessed with individual and systemic violence and yet not be violent personally, then you might wonder too if I’m going to be the next Adam Lanza or Anders Behring Breivik or Seung-Hui Cho or James Holmes.

When I was in tenth grade, I was called into an administrator’s office and accused of planning a school shooting. When I told him that of course I wasn’t planning a school shooting, he pointed out that I seemed to be obsessed with weapons and violence, and then he asked me if I was sure I’d never thought about actually hurting someone.

When I was in twelfth grade, my mom told me that there were people in the church who thought I was planning to join Al Qaeda or some other terrorist group.

These things are real, and they prove to me that my fears – both for myself and other people – aren’t unfounded.

Image description: Me wearing a white t-shirt, standing in a room with windows facing a hallway with elevators and various college flyers. I'm looking down and holding a sign handwritten in purple ink that says, "I'm not afraid to say I'm autistic." Photo by Shain Neumeier in December 2012.

I don’t claim to understand everyone’s motives. If I did, there wouldn’t be any more obsessive quests for answers after each and every act of mass violence I’ve ever learned about since September 11.

But I can say with certainty that it’s not mental illness or autism or an interest in violence or being bullied or social awkwardness or violent roleplaying or violent video games or violent creative writing that lead to mass murder. Those aren’t warning signs. They shouldn’t be treated as warning signs.

There’s so much ableism and ageism wrapped up in the assumption that these things are somehow predictors of future violence. Ironically, those same assumptions are used to justify real violence against people like me, and often by the people who in theory are supposed to protect us.

Does Peter Lanza have a right to his opinions, thoughts, and emotions? Of course he does. I’m the last person to say that his experiences and emotions are not valid.

But that doesn’t make them any less hurtful. It doesn’t make Andrew Solomon’s article any less painful.

The two most painful things in that article for me to read were when Solomon asked Peter what the family did about a funeral for Adam, and Peter said that no one would ever know, and then when Peter said that he wishes Adam had never been born.

Maybe the family did host a funeral for Adam. Maybe they didn’t. I wasn’t there during the interview, so I don’t know how Peter said that comment, but at least in writing, it came across as so cold and so callous, and I – I couldn’t form words.

And as to the second comment – we have no way of knowing when someone is born if that person is going to be a wonderful amazing human being who helps many people or if that person is going to turn into a horrible person who does horrible things to other people. It’s so easy to say after the fact that you wish someone hadn’t been born.

But when the parent of a young man who obviously did have many disabilities says that, even though his son was a mass murderer who killed twenty children, just how close in time this article was published to the March 1 vigils in memory of hundreds of disabled people (plenty of them autistic) murdered by their parents only gives this statement a chilling underline.

Image description: Me wearing a dark blue winter coat, a beige suit jacket, and an ochre shirt, with a blue lanyard and beige gloves, facing slightly away from the camera while speaking. I'm standing in front of a large poster that says "Mourn for the Dead ...And Fight Like Hell" for the Living followed by a list of victims' names, ages at death, and manner of murder. Photo by Kory Otto-Jacobs at DC Day of Mourning Vigil in Farragut Square on Friday 1 March 2013 as part of the National Day of Mourning for disabled people murdered by caregivers and family members.

In the interview, Peter Lanza talked quite a bit about how Adam never came to terms with the Asperger’s/autistic diagnosis.

There’s no way to know, but I can’t help but wonder whether being able to accept being autistic and be around other affirming autistic people might have changed the course of events.

For all the constant media pattern of assuming that someone who kills a lot of people must be autistic or mentally ill, two of Adam Lanza’s victims, Josephine “Joey” Gay and Dylan Hockley, were autistic too.

In the rush to railroad autistic people, the media often conveniently forgets that fact.

Both Andrew Solomon and Peter Lanza kept emphasizing that maybe if Adam had received treatment, this might not have happened. I can’t underscore enough how damaging this is for so many people.

First of all, Representative Tim Murphy’s bill in Congress right now, if passed, will severely cut funding for community-based programs supporting people with mental illnesses as well as the advocacy agencies that exist to protect people’s rights.

This bill comes after his hearing almost an entire year ago when witness after witness kept testifying to his committee about how horrible and dangerous people with mental illnesses are, and only one brave witness dared say something different.

Secondly, the sad and extremely violent reality is that the vast majority of therapy and program options for people with mental illness are coercive, demeaning, and paternalistic.

Thirdly, this article reinforces the social presumption that the default option for mental illness is and should be psychiatric treatment. And while I absolutely support the right of anyone who wants psychiatric treatment of any kind to access that treatment on their own terms, the reality is that not everyone wants to go that route and that’s okay.

Fourthly, there is the reality that this article, written by a famous journalist in a well-known publication, will be treated as an authority, and that the statements in it can and will lead to even more stigma and less voluntary options for people who do seek out psychiatric treatment.

These are realities and consequences that profoundly disturb me.

I can tell you why I am obsessed with violence.

It is because I am also completely and absolutely committed to the ideal of justice.

There was a long time after September 11 when I dreamed about a career in counterterrorism, with the idea that I could help stop future attacks.

The broad theme of my work for the past five years has been addressing violence against disabled people, especially disabled people made even more vulnerable because they also happen to be queer, trans, poor, immigrants, or people of color. Violence against us happens all the time, both by other people in the community and by government forces.

My work is emotionally exhausting.

Every so often, I receive an email out of nowhere from someone asking for help because they or their kid are in an abusive situation at school or work.

Writing and roleplaying about individual and systemic violence, and how it impacts everyone in the community, helps me process my emotions. In fact, it’s the only thing that actually works for me. It’s not that I take sadistic pleasure out of writing about violent things or that I secretly wish I could do violent things to people I’ve met.

It’s part of the same obsession with understanding why and how and what next. I wasn’t exaggerating when I said that I understand the desperate search for answers in the wake of violence. That desperate search has been the narrative for much of my conscious life.

Image description: Shain Neumeier, white person with short blond hair and glasses, and I standing on a traffic island in the middle of a multi-lane highway on an overcast day. We're holding hand-drawn and colored signs to protest the abusive Judge Rotenberg Center, which uses painful electric shock as punishment/behavioral modification for disabled residents. Shain's sign says "Stop the Shocks" with lightning bolts cutting through the o's, and I'm holding two signs, one that says "People not Experiments" and the other that says "Shocked for... hugging staff, swearing, nagging, getting out of seat, taking off coat, screaming, tensing up, closing eyes, raising hand. Ban the GED [electric shock device]." Photo by Taylor C. Hall, January 2013.

In the end, I’ve started asking different questions. It’s less often, “Why did this mass tragedy happen?” and more often, “Why do people insist that the only people capable of committing such horrible crimes must be an Other?” and “Why do we treat specific instances of mass tragedies as both more important and more horrible than the continuous and brutal violence against marginalized people?”

I don’t mean to belittle the real victimhood of people killed by mass murderers or the pain for their living loved ones. I don’t mean to belittle the internal struggle that must happen for anyone who finds out someone they loved or knew well was responsible for those killings either.

But the questions are worth asking because they, too, carry life or death consequences. They carry consequences for my life and my experiences, and they carry consequences for those of so many of my friends and colleagues too.  

I don’t want my children to grow up in a world where they have to worry about whether their teachers or bosses will peg them as the next mass shooters if they just happen to be loners, socially awkward, interested in violent games, autistic, or mentally ill. If my children are autistic or mentally ill or both, I don’t want them to grow up in a world where their humanity is questioned every single day, or where police brutality based on their disability status could end their lives.

The fact that much of the response to a horrific act of violence has been to encourage more violence is not merely astounding, but extremely sad.

The worst part of all of this is knowing that no matter what I say or do or write here, the people who have power in media and politics will carry on with their dehumanizing campaign, and I – we – don’t stand a chance when these things are simply accepted as true and normal and how things are.

If you’re reading this essay, all I can ask is that you consider an alternative narrative. Instead of trying to play the blame game for violence – autistics one day, people with mental illness the next, every young Black man the week after that – can we start to focus on healing within ourselves and our communities? Can we cope with our trauma in less hurtful ways?

06 March 2014

New Publication: Torture in Healthcare Settings

Loyal readers, first-time visitors, occasional maybe-I-can-check-Autistic-Hoya-because-I'm-bored folks, I'm super excited this week because an article I wrote has been published in a new compilation from the Anti-Torture Initiative, housed at the Center for Human Rights and Humanitarian Law at American University Washington College of Law. The complete PDF of the full compilation was published to the Anti-Torture Initiative's website this week and can be accessed by clicking here. (Alternative link, if it works better to copy and paste: http://goo.gl/UPsx2w )

Why is this awesome, you ask? Because the publication actually explores many issues impacting multiple marginalized groups who face torture, abuse, and discrimination in healthcare, including in the areas of reproductive health, healthcare for trans* and queer people, access to healthcare for racial and ethnic minorities, and healthcare, treatment, and services for people with psychosocial and intellectual disabilities. More importantly, many of the authors offer specific recommendations for providers and policymakers to address existing issues and prevent future abuses.

My chapter is called, "Compliance is Unreasonable: The Human Rights Implications of Compliance-Based Behavioral Interventions under the Convention Against Torture and the Convention on the Rights of Persons with Disabilities," and I'm thrilled that it's here. If you ever wanted to read (yet something else that I've written) about the inherent abuse and ableism embedded in the systematic use of restraints, seclusions, aversives, and applied behavior analysis as a means of ensuring compliance from their disabled victims, you've got a lovely chance.

Support from kickass activists Shain Neumeier and Ari Ne'eman went a long way in helping me with the document, too. Also the world is better because Tina Minkowitz, International Representative of the World Network of Users and Survivors of Psychiatry whose article is also published here, lives in it.

I hope everyone who would like to has a chance to read this groundbreaking report, and shares it widely! Comments for my article are also more than welcome.

(All of the chapters in this publication, needless to say, carry trigger warnings for often graphic descriptions of abusive situations and practices, often spurred by racism, sexism, queerphobia, transphobia, and ableism, among other factors.)

Image description: A screengrab of the cover of the publication, with the title Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture's 2013 Thematic Report on a blue background at the top, a black and white photograph of a patient lying on a bed with linens in an institutional room with a window and heater in the middle, and then at the bottom against teal backgrounds in two different shades, the logos for the American University Washington College of Law and then the Center for Human Rights and Humanitarian Law: Anti-Torture Initiative.

The ATI's blurb is here:

The Anti-Torture Initiative’s first publication brings together contributions by more than thirty international experts in response to Special Rapporteur Juan E Méndez’s provocative 2013 thematic report on torture and other abusive practices in healthcare settings.  The articles featured in this unique volume reflect and expand upon key aspects of the Special Rapporteur’s report as well as on implementation of recommendations contained therein.  Each piece provides novel insights into essential topics and pressing issues at the forefront of the intersecting legal, medical, and policy fields. The questions raised by the Special Rapporteur’s report, and the array of innovative perspectives offered in response by each contributing author, illustrate a profound commitment to tackling the challenges that continue to arise in promoting and protecting the human rights of persons in diverse healthcare settings globally. 
The volume features an introduction by the Special Rapporteur on Torture, as well as articles by the UN Special Rapporteur on the Right to Health, the Chairman of the UN Committee against Torture, as well as renowned academics, legal, medical, and policy experts, and human rights advocates. 
The compilation explores some of the following topics:
  • Interpretative and guiding principles and the evolution and application of lack of legal capacity as a doorway for torture and other ill-treatment
  • Emerging recognition of different forms of abuses in health-care settings as torture and other ill-treatment, including compulsory detention for medical conditions;  Denial of pain relief
  • The treatment of persons with psycho-social disabilities or intellectual disabilities globally
  • Special protection of minority and marginalized groups and individuals as a critical component of the obligation to prevent torture and other ill-treatment;  
  • Reproductive rights violations as torture and ill treatment
  • The relationship and interplay between the Convention against Torture, the international prohibition against torture, and the Convention on the Rights of Persons with Disabilities
  • Recognition, enforcement and accountability for various abusive practices in health-care settings and the need to obtain redress and fair and adequate compensation, including the means for as full rehabilitation as possible.

SO. If I have successfully managed to pique your curiosity about the new report, I've copied the full table of contents below to better explain the various chapters.

Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture's 2013 Thematic Report


vii -  Acknowledgements

ix - About the Center for Human Rights & Humanitarian Law and the Anti-Torture Initiative

xi - About the Mandate of the UN Special Rapporteur on Torture

xiii - Foreword (Hadar Harris)

xv - Introduction (Juan E. Méndez)

1 - I. The Prohibition of Torture and the Right to Health: An Overview

3 - A Contribution by the Special Rapporteur on the Right to Health: Right to Health and Freedom from Torture and Ill-Treatment in Health Care Settings (Anand Grover & Jamshid Gaziyev)

19 - The Problem of Torture in Health Care (Tamar Ezer, Jonathan Cohen, Ryan Quinn)

43 - The U.N. Committee Against Torture and the Eradication of Torture in Health Care Settings (Claudio Grossman)

49 - II. Abusive Practices in Health Care Settings and International Human Rights Law: Reflections

51 - Torture or Ill-Treatment in Reproductive Health Care: A Form of Gender Discrimination (Luisa Cabal & Amanda McRae)

65 - Poor Access to Comprehensive Prenatal Care, Including Opiate Substitution Treatment: A Form of Ill-Treatment for Women with Drug Dependence During Pregnancy (Mikhail Golichenko & Sandra Ka Hon Chu)

73 - Consent Signed with Invisible Ink: Sterilization of Trans* People and Legal Gender Recognition (Micah Grzywnowicz)

83 - When Healing and Comforting Hands Turn Hostile and Harmful: Homophobia and Transphobia in Health Care Centers (Rafael Mazin)

91 - Medical Treatment of People with Intersex Conditions as Torture and Cruel, Inhuman, or Degrading Treatment or Punishment (Anne Tamar-Mattis)

105 - Torturous “Treatment?” Assessing Government and Donor Responsibilities for Abuses in Drug Detention Centers from a Human Rights Perspective (Rebecca Schleifer & Richard Elliott)

123 - Privatizing Cruelty—Torture, Inhumane and Degrading Treatment in Non-Governmental Drug Rehabilitation Centers (Roxanne Saucier & Daniel Wolfe)

133 - Denial of Pain Treatment and the Prohibition Against Torture and Ill-Treatment (Diederik Lohman & Tamar Ezer)

141 - Joint Statement from the American Psychiatric Association and the World Psychiatric Association in Response to the Report of the Special Rapporteur

151 - Response by the Special Rapporteur to the Joint Statement by the American Psychiatric Association and the World Psychiatric Association

155 - An International Comparison of Mechanisms in Mental Health Monitoring (Judy Laing & Rachel Murray)

169 - Implementing a Paradigm Shift: Implementing the Convention on the Rights of Persons with Disabilities in the Context of Mental Disability Law (Peter Bartlett)

181 - Compliance is Unreasonable: The Human Rights Implications of Compliance-Based Behavioral Interventions under the Convention Against Torture and the Convention on the Rights of Persons with Disabilities (Lydia Brown)

195 - “You That Hide Behind Walls:” The Relationship Between the Convention on the Rights of Persons with Disabilities and the Convention Against Torture and the Treatment of Institutionalized Forensic Patients (Professor Michael L. Perlin & Meredith R. Schriver)

219 - On Torture, Ill-Treatment and People with Psychosocial and Intellectual Disabilities: Some Thoughts About the Report of the Special Rapporteur (Robert Dinerstein)

227 - A Response to the Report by Juan E. Méndez, Special Rapporteur on Torture, Dealing with Torture in the Context of Health Care, as it Pertains to Nonconsensual Psychiatric Interventions (Tina Minkowitz)

247 - The Role of Global Psychiatry in Advancing Human Rights (Oliver Lewis)

263 - Torture in Health Care Settings: Urgent Issues and Challenging Questions (Yuval Ginbar & James Welsh)

277 - Legal Capacity, Informed Consent, and Stigmatized Identities: Reform and Remedy Efforts in Central and Eastern Europe (Claude Cahn)

291 - Torture and Ill-Treatment Against African Persons with Psychosocial Disabilities In and Out of Health Care Settings (Shuaib Chalklen, Hisayo Katsui, Masa Anisic)

299 - Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment on Torture in Healthcare Settings (Juan E. Méndez)