12 December 2015

Why do I think I'm autistic . . .

This was actually originally a question on a survey as part of a research study (which asked me why do I consider myself to be autistic, in addition to having once been handed an on-paper diagnosis, which yes is a class privilege to be able to get), but my answer ended up being so long-winded that I'm going to put it here, just in case it's helpful to anyone who might be out there questioning and wondering whether they might be autistic.

(This is totally unscientific and unempirical, but based on anecdotal observations from conversations with hundreds/thousands of other autistic people -- both with formal diagnoses and without them, both speaking and nonspeaking, etc. -- it just seems that all of these characteristics are *more common* in autistic people than they are in nonautistic people, and that the more of these kinds of characteristics someone has, the more likely they are to be autistic. Obviously anyone who isn't autistic -- which includes neurodivergent people who aren't autistic -- could have any one or more of these characteristics too. And of course, there are characteristics of being autistic that seem to be really common in autistic people, especially as compared to nonautistic people, that I don't have.)

Like many (but of course, not all) autistic people, I ...

- Keep an erratic sleeping schedule, and am often nocturnal by both instinct and preference.

- Absolutely suck at executive functioning, which involves planning tasks, prioritizing tasks, initiating tasks, following through on tasks, meeting deadlines, organizing complex multi-step tasks, etc.

- Have very uneven skills academically, but present as conventionally "gifted." I functioned really, really well academically from K - 12, and then when I went to college, a lot of coping skills died. I developed some stuff, sure, but I know some stuff went straight out the window too, because huge changes, and also almost total lack of structure/scaffolding. ("Now you're an adult, and you must be totally independent, and if you can't do that, too bad f u.")

- Have hypersensitivities in all my senses (to noises, to smells, to tastes/textures, to touch/tactile sensation, to sights), which create both (1) sensory-seeking opportunities (I still rub a silk sleeve over my face -- the very same one I've had since I was 3 and I'm now 22; also, tassels tassels tassels -- yes I did in fact get a picture of myself inside the White House rubbing a tassel there all over my face) and (2) sensory-averse reactions (I am physically hurt by a lot of fluorescent lights; also, touching me lightly -- not firmly -- hurts).

- Tend to be more oblivious to surroundings/background information/implied knowledge. (This includes social knowledge -- everyone else picks up on updates in people's lives/doings much sooner than me; spatial knowledge -- I can't recognize the same location in the dark versus in the light and also won't realize that objects/buildings/things exist unless they're explicitly pointed out to me; etc.)

- Frequently speak in circles, because I have extreme frustration when I believe the other person/people do not understand what I'm trying to communicate, so I attempt to rephrase (and can rephrase an infinite number of times, and go on for-fucking-ever with this unless stopped).

- Take great pleasure out of intense fascination with particular topic areas in ways that non-autistic people often do not.

- Relate to other people (and show that I care about them) specifically by seeking out gifts/activities/internet memes/other tangible or observable things that relate directly to their preferred interests or activities, but am often perceived as just creepy or weird by non-autistic people for doing this.

- Absolutely hate crowds and crowded locations because they're overwhelming and drain me of energy to start, do, or finish things, or just to concentrate, or just to survive.

- Occasionally lose the ability to produce oral speech even though I usually have the ability to use oral speech, especially when under extreme stress or exhaustion.

- Stim, like by using my tongue around my mouth in specific ways, or touching specific kinds of textures, or spinning in circles for a long time, or playing with water forever, including in fountains attached to government buildings, which results in being yelled at by security. (I stim when I'm anxious, when I'm bored, when I'm upset, when I'm happy, or when I'm excited. Also when I'm trying to communicate to another autistic person that I exist and am also autistic.)

- Tend to like certain types of structure and routine in ways that are not typical for non-autistic people. For example, whether playing with toy cars, Barbie or Bratz dolls, or Star Wars action figures, I would always line up all of the figures in specific orders/formations and three-dimensional spatial locations in my play area that almost never changed, which confused the hell out of all of my non-autistic friends/playmates. In another example, I'm also totally okay with eating literally *the exact same thing* for every meal for months on end, and this does not bother me.

- Extremely detail-oriented. For example, I write novels and do collaborative writing style roleplaying, and in both, I typically develop in immense detail aspects of constructed languages, socio-economic-political systems, cultural norms/histories, etc., as well as populating worlds (both those based on the real world and those that are totally sci-fi or fantasy settings) with hundreds or thousands of characters thought out in depth.

- Am highly attracted to and empathetic with animals (like cats and dogs) and fictional characters, which I feel are like real people and whom I care about in the same way I do as real people.

- Tend to take an incredibly long time to develop close friendships with people, and am constantly afraid of losing any of the friends that I have, because many of my closest friends in the past aren't my friends anymore (often but not always because they decided to not be my friend because I wasn't cool).

- Was severely bullied throughout school, both by other students and sometimes by teachers, for being an obvious weirdo. I'm usually perceived as out of touch, socially awkward, weird, abnormal, and just not with it when compared to a lot of my peers.

- Won't shut up when I really care about something, and am often perceived as arrogant, stuck-up, a know-it-all, full of myself, showing off, etc. even though I'm just trying to share information that I think the other person will care about or benefit from having.

- Don't really think in linguistic concepts/language. I think both visually and conceptually. So my thoughts happen in images (still pictures, moving videos, or four-dimensional fluid shapes/lines/fields/things-that-aren't-describable-but-I-probably-sound-like-I'm-under-the-influence-of-LSD-now) that represent concepts.

- Hate group work. With the burning passion of ten hundred thousand flaming suns gone supernova.

- Can be both hyposensitive (not that sensitive) or hypersensitive (so much sensitive) to pain. Like, I scream and cry when getting shots. But after having my wisdom teeth out, due to combination of apparent stoicism and serious sensory aversions to any pills ever and most liquid medications, didn't really take any pain meds once I went home.

- Tend to be either really good intuitively at doing a thing, or really, really suck, and I keep sucking at it in the same pattern of sucking at it.

- Think systematically or in patterns. See above. (Example: If I'm worried or anxious about something, I will repeatedly go over every possible outcome, from the best possible one to the worst most catastrophic one, and everything in between, in great detail as to how/why each could happen, and the likelihood of each outcome, but despite knowing rationally that the most catastrophic ones are usually not that likely, will still anxiously panic over the possibility they are true.)

- Rely on scripts (entire encounters, types of situations, for behavior, or for what to say, etc.) for like 95% of my interactions involving other people, including other autistic people.

- Really, really like the feeling of pressure against my body. I often sit with legs/ankles crossed so I feel the pressure, or with my hand between both knees (I've learned that people assume I'm sexually touching myself in public if it's any higher up my leg). I like to sit so that my legs/ankles/feet can press against the legs of chairs or tables. I like to fall asleep with my arms tucked under my torso. Weighted blankets are awesome.

- Have some super awesome fine/gross motor skills, and some totally sucky fine/gross motor skills. For example, I have highly calligraphic scripted handwriting, and do black and white drawings in pen only (no pencil involved ever) with highly detailed cross-hatching. But then again, I've never reliably learned how to tie my shoes or do monkey bars or jump rope or hula hoop like most other kids I grew up around did.

- See squiggly bright lines and dots of various constantly-shifting colors whenever I'm conscious, which includes as I'm falling asleep too. (I'm sighted, which means I'm neither blind nor low-vision -- not sure how/if blind or low-vision autistic people have these things.) Some people call them "the floaters."

- Always see the world in static (like the kind of "noise" that makes photos not great quality). Someone asked about this on the Facebook, and yes, I have the thing where I always have thought I was seeing molecules or something everywhere, in all lighting and wakefulness/sleepiness conditions, because the whole world is comprised of these tiny dots that make up literally everything I perceive visually.

- Have HIGHLY vivid, frequently narrative dreams, many of which I remember in incredibly detail. (Many of mine are also lucid.)

- Am synesthetic, meaning I experience many kinds of sensory input as *other* kinds of sensory input. Like, listening to music or even someone just talking, produces colors and shapes and yay.

- Will re-read or re-watch entire books or movies or tv shows -- or specific scenes in them -- that provoke deep, intense emotional reactions in me.

- Am highly empathetic to the point of over-empathizing. I may not always be able to process cognitively what I'm experiencing (see point below), but I am overwhelmed by the emotional responses of people around me -- which includes things I read on the internet, because I'm experiencing them as the other person does. (Not in the way of, I know how it is to be them when I'm not them or don't have the same experiences, but in the way of, their anger settles in me, or their sadness settles in me, and I can't get rid of it.)

- Have trouble identifying/naming and separating/distinguishing all of my emotions or even bodily sensations.

- Am not antisocial. I'm an introvert, but I display a lot of outwardly extroverted-seeming traits, like talking to lots of people, going to events with lots of people, and having people over my place. Social interaction can be fun (or can suck massively, depending on who is involved and what they do to/around me), but it's draining. I need lots of extra time to recover. This is true even if the other people involved are also autistic.

- Desire to have some amount of environmental control that it seems like nonautistics tend not to have (either in general, or as intensely). Like, I get really anxious if other people touch or move my belongings/possessions, even if they're people I know really well and trust in general.

- Show that I trust others by opening up to them, emotionally and about my experiences.

- Often feel marginal and like an outsider (not just because of various marginalized experiences/identities that I have) even when I theoretically should be able to belong to a particular group.

- Typically have gravitated to be friends with people who were significantly older or significantly younger than me, and not my age-peers.

- Tend to do activities the exact same way all the time (like how I make pasta sauce or mint hot chocolate) even when I learn a better/easier way to do them. This extends to what I order in restaurants. (I love trying new foods, actually, but if I know I have a favorite thing, why wouldn't I order my favorite thing? Why would I order a second or third favorite thing?)

- Experience distinct auditory processing disability stuff. I hate conference calls maybe almost as much as ISIS hates the existence of everyone-who-isn't-ISIS. I will almost never understand your name the first time you tell it to me unless it's also on the business card you're handing me or the name tag stuck to your shirt / hanging from your neck or the placard in front of your face. You have to repeat it.

- Can't recognize faces. (It's called prosopagnosia or faceblindness.) As a sighted person, yes, I do see your face. I am capable of seeing people next to each other and realizing they do not look identical, even if they present their gender very similarly, are close in age, have similarly sized/shaped bodies, and are from the same racial group. But I can't reliably tell people apart in sequence, or out of context from when/where/how I usually encounter them, or after a few days or weeks or months since regular contact. I can sometimes, to varying degrees of reliability, recognize people on other characteristics, like voice, manner of speaking, posture, body movement, other distinctive physical features, or hairstyle (including facial hair when someone has it), but not by face. I can also figure out if someone else knows me often by their body language (like prolonged eye contact, suddenly smiling, or referring/addressing me by name when I'm not wearing a nametag or ID), but I have no clue who they are and will *never* have the experience of feeling like I recognize someone but not remembering their name. Half the time I'm faking that I know who you are. Just tell me your name up front next time.

- Have significant trouble in group settings including purely social, unstructured ones. I can never tell if it's my turn to talk, or if there's an opening where it's okay to jump in with a comment/question/story in the convo, and frequently, by the time I figure it out, it's too late and suddenly I'm interrupting someone and have just become an accidental asshole.

- Collect random shit I don't actually need but am somehow convinced I will need later. Like receipts. Dating back to 2004. And fortunes from fortune cookies. And tags from clothes. Literally everything. All this totally useless stuff that it pains me to toss out because what if I need it one day.

- Have vastly varying periods of total distractibility where absolutely nothing happens even things that really should (like eating food) and periods of doing ALL the things!!!!!!!!!!1eleventyone where way too many things somehow happen. I don't reliably have the same abilities, skills, or energy/capacity to do the same things from one point in time to another.

- Can hyperfocus for hours at a time on ironing out the tiniest of details necessary to complete one activity/task, to the point where I forget that things like pissing/shitting/eating/drinking liquids are things that a body generally needs to do. For over 18 hours sometimes.

- Hate tags. Yes, tags. They are horrible. Why do people insist on putting them on clothes? Anywhere? Ever? But seriously, especially the really large, stiff ones in some shirts right where the neck is.

- Suffered for having my extremely thick, easily tangled hair (which used to be very long, especially as a kid), which meant I went through what both my partner and I call the Daily Torture Session. It was worse than just frustrating or annoying. It was actually painful and it sucked. And no one would believe me most of the time, because they assumed I was just exaggerating or being overly dramatic. But it's true.

- Often begin to talk louder and louder, especially when I'm excited about something (which can include being excited about knowing about something), without realizing it, or being aware of exactly how loud others perceive me as.

- Constantly grind my teeth or chew on my own tongue (to the side of my mouth). I'm not sure if it's a pressure-seeking thing, or another kind of sensory-seeking, or a specific kind of stimming, but it's been a thing my whole life, and was the reason I had to get a retainer when I was a kid. I know a lot of other autistic folks who bite or chew on their fingers, hands, or arms as well as or instead of doing the teeth grinding thing.

- Have a very powerful and strong, intuitive sense of justice and fairness. It hurts when something seems wrong, when someone seems like they're being fucked over. I usually immediately relate to and identify with the underdog or the outsider.

- Don't care much about certain types of reputation/outward perceptions of me (like, buck the system; think whatever you want to think; fly that freak flag high; I'm here and queer get used to it; I once showed up to a White House event in a t-shirt while everyone else was in Western Business Attire; etc.) but am also extremely anxious about what others think of me vis a vis my character, my integrity, whether I'm worth being/having around.

I'm sure there are many more, but another thing I have is anxiety around lists because I'm always wondering if I left something off the list (and usually do/did). (Bonus! If you keep coming to this page enough, you might notice I keep adding to this list, for the reason stated earlier in this paragraph!)

No really, I wasn't kidding about the White House tassel thing: 



From December 2013, inside the White House. Clearly the thing to do is to find the nearest large fluffy tassel and rub your face all over it in stim-heaven.

My original description:

The tassels on the drapes were SO STIMMY YAY. (Pretty sure this is not the normal way to act in the White House. OH WELL.)

A total stranger took this picture because I apparently was hilarious? So I got them to email it to me, for your viewing pleasure.

Photo by Nicole Shambourger.

Image: Me dressed in a dark pantsuit and patterned, embroidered red scarf, very happy, sticking my face into a giant tassel decoration on drapes in the Green Room of the White House.

***

If you are wondering or questioning whether you or someone you know might be autistic after reading this post, here are some resources that could be helpful:

03 December 2015

too dry to cry

Content/TW: Gun violence, mass shooting, detailed discussion of ableism and racism (especially against Black and Brown people) surrounding such events, mention of sexual violence, occasional swearing. 

Edit (30 June 2016): I have removed a small section of this post that overall was not relevant to its main points of discussion and did not need to be included.

I haven't written nearly as frequently for Autistic Hoya in the last two years or so as I did for the first few years that this blog existed. It seems that the few times I interrupt my long absences here now are most often for devastating news -- for writing flowing straight from my pain, and sometimes my anger, and often quite a bit of both.

Today, there is too much. Too much.

Today, the top news story in the U.S. is the hours-long mass shooting at the embattled Inland Regional Center in San Bernardino, California. The Inland Regional Center is responsible for providing and coordinating community-based services to over 31,000 people with developmental disabilities (likely including many autistic people) in San Bernardino and Riverside Counties east of Los Angeles. At last count, 14 people are estimated to be killed and 17 additional injured. The shooting went on for hours. So far, we know that the shooting happened inside one of the buildings, at a county-wide event honoring healthcare professionals. We don't know who specifically the attackers targeted because the victims haven't been publicly identified yet. Police have counted three suspects -- two men and a woman.

I learned about the shooting while it was still happening. I was in class.

TASH is hosting its annual conference in Portland, Oregon right now. A friend told me the conference is reeling.

My email inbox has exploded with messages on disability lists reacting in real-time to the attack.

Every time I glance at my phone, I see more news updates scrolling across the mobile browser, telling me police have killed two suspects, are searching an apartment for possible explosives, won't release identities of the dead until next of kin are notified, are speculating about motive.

My Facebook news feed is equal parts horror and disgust and fear and sorrow and anger and brokenness and fragility from this community, these many fractured communities, where I have learned to live and love and suffer and often, to cry.

***

I was going to use "Anti-ableist ways to respond to today's ongoing tragedy in San Bernardino" as the title for this blog post. But it sounds too artificial. Too prepared. Too hollow.

I wanted to write this because I can't stay silent. I can't. Not when those struggling alongside us, those attempting to practice allyship, those not directly impacted by ableism want to know what to say or do. How to react.

We have a saying in culturally autistic spaces -- "I need help reacting to something."

I do. It's nameless things dismantled all over again.

Minneapolis. Chicago. Beirut. Yola. Kano. Baghdad. Paris. Colorado Springs.

Now San Bernardino.

I can't. I just can't.

The trouble is, it's less that I can't react than that I'm crashing from trying to react to too many things all at once. Made it home from school in the rain. One load of laundry done. Dinner for four made, eaten. Dishes washed, put away. Old exam questions pondered, discussed with fellow classmates. Emails sent. All while forcing myself not to feel too much. Not to think. Just to act. Follow a script. A routine. Forget I am real. Forget I inhabit this taut and trembling flesh.

This is empathy overload. This is emotional shutdown. This is autism.

***

There was a news article earlier today quoting someone from the FBI describing the attackers as "Americans, not terrorists." Somehow totally missing the complete irony of just how full of terrorists the U.S. always has been and continues to be, in both state sanctioned and individual forms.

Our country is steeped in violence. For the vast majority of us in the U.S. who are not Indigenous or Native, we live on stolen, colonized, occupied land.

In our Property class in law school today, a student objected to the concept of adverse possession (when someone can gain ownership of someone else's land/real estate simply by occupying it for a long time without the owner's permission), saying, "But this is America!" And a number of us responded that, well, nothing could be more American than taking someone else's land. After all, that's how this country was built.

Not too far from our school, there was a rally today at Ruggles Station against police terrorism targeting low-income Black and Brown communities, as we have learned of the police murders of more unarmed Black men -- Jamar Clark in Minneapolis last month and Laquan McDonald in Chicago last year, whose death was videotaped and covered up by not only the police department but its commissioner and the city's mayor.

President Barack Obama described himself as very good at killing people, as the number of Brown people killed by remotely operated drones has risen higher under his administration than under the George W. Bush one.

Transwomen of color face routine violence in the streets from strangers and police alike. Women who dare criticize men or even acknowledge misogyny risk terrifying, brutal retaliation. My psych disabled and mad, neurodivergent friends live with constant terror of possible incarceration in the name of treatment and public safety. While my light skin and educated words lend me some measure of protection, my Black and Brown friends risk their lives upon encountering a police officer for so much as existing.

But of course, the term "terrorism" is steeped in a particular racism that attaches it only to Brown people and those racialized as Muslim.

***

It's everywhere on Twitter, Facebook, anywhere you care to check. Ordinary folks expressing shock, horror, outrage that anyone might target disabled people for violence. Surprised by it. Wondering how, how could anyone go after the disabled?

My friend Maddy Ruvolo says, "So many people talking about how they can't believe shooters would target disabled people like they're not complicit in the violence disabled people face every single day. If you're surprised by violence against disabled people, you haven't been paying attention."

This narrative is superficially sympathetic, but it's plied with the pity endemic to pathologizing ways of thinking about disability. It depends on understanding disabled people through pity/charity frameworks, on infantilizing us as eternally untouched by reality (negativity, fear, violence, malice) on the presumption of incompetence.

Expecting disabled people to be angels, innocents, somehow specially exempt from reality -- similarly to the misogyny in the idea that hitting women is somehow especially wrong, but hitting men is normal, if still wrong. Thinking about us as objects, not subjects, not agents of our own destinies. Treating disabled people as some specially innocent population, as readily available charity/community service projects here for abled people to feel good about themselves for being nice to us -- for not calling us retarded, for not refusing to let us in the room, for not staring. Relegating us to a constant position as objects for the edification of abled people.

(Sign up for Best Buddies. Be friends with a person with a developmental disability once a week and occasionally at group events with all the other people with developmental disabilities. Give yourself a pat on the back. Grow some warm feelings. Make the person with the disability smile and believe you are really their friend. Never or rarely include them in your other outings with your regular friends. Never confide in them your trust. Never think of them as simply another person you know. Consider yourself a do-gooder. Don't wory; the disabled person won't notice.)

Wondering who could hate disabled people.

Believe me, plenty of people do. Hate is nothing new. And no, pity and hate are absolutely not mutually exclusive. Sometimes they depend on each other.

Over half of people killed by police are disabled. I think of Stephon Watts, Steven Eugene Washington, Natasha McKenna, John Williams, Mohamed Usman Chaudhry, Kajieme Powell, Freddie Gray, all disabled and Black or Brown.

One study found that 83% of women with developmental disabilities will be raped at least once in their lifetimes, and that more than half that number will be raped at least ten times before the age of eighteen alone. That almost 40% of men with developmental disabilities will be raped at least once in this lifetime.

What terrifies me is that these numbers are probably conservative estimates.

This is ableism.


***

The Los Angeles Times announced that police named Syed Farook as one of the shooting suspects.

Of course the first person named a suspect in the shooting has a name racialized as Brown and Muslim -- and when the articles begin to appear, his neighbor discusses how he became more outwardly religious (or was perceived that way), predicated on the presumption that of course, this is relevant. Of course it matters that he grew a beard. That he began to wear non-Western clothing. We are expected to read these details and assume the rest of the narrative -- young Muslim becomes a terrorist by becoming more Muslim.

(They say the second shooter is Tashfeen Malik, now giving the public two identifiable Muslim names.)

How soon will the FBI's earlier description of the shooter as a U.S. citizen be forgotten? How soon will news coverage shift to obsessive nitpicking over Syed's religious identification and practices, speculating about connections to Daesh (ISIS) or Al Qaeda or some other such group? How soon will the rhetoric shift from the ever-familiar refrain of "we need to fix the mental health system" to "this was possibly terrorism-related?"

***

Congressman Tim Murphy's pet project, House Bill 2646, is moving rapidly through Congress. We know it as the Murphy Bill. You might know it as the Helping Families in Mental Health Crisis Act.

He began pushing this bill right after the Sandy Hook shooting in December 2013.

It's the kind of measure that sounds superficially nice and potentially worthwhile. He cloaks it in the rhetoric of public safety, greater good, better mental health services. The lie that these mass shootings are the product of mental illness.

Here's what the bill does: Pumps funds into involuntary, coercive treatment through both inpatient and outpatient commitment. Incentivizes states to increase use of involuntary, coercive treatment. Cut funds from community-based programs, services, and supports. Slash funds for the national network of protection and advocacy systems that work to promote the rights of people with psych disabilities -- a network created in large part because of horrifying revelations about the all-pervasive abuses in institutional settings (the psych ward, the mental hospital, the long-term residential institution). Weaken doctor/patient confidentiality protections for people with psych disabilities.

Its supporters will tell insist that mental health reform is necessary to stop gun violence.

We know we need better mental health services. We know the existing system is riddled with failures, is a frequent source of (re)traumatization for so many of us.

But these issues are so separate from gun violence.

Stop pathologizing violence. Violence is not a mental illness, but psych disabled people, like all disabled people, live with the constant possibility of violence and abuse in this profoundly ableist world.

They will tell you that jails and prisons are now the nation's largest mental health care providers. That people with mental illness don't belong in jail or prison, but instead in specialized facilities. That they need treatment instead.

Don't believe the lie that new asylums, new mental institutions are anything other than a different --and often, far less regulated -- form of incarceration than the penal institution.

Disrupt the pattern of disability hierarchy. The Inland Regional Center's clients with developmental disabilities undoubtedly include many, many people who also have psych disabilities. We will find these narratives -- that (1) people with developmental disabilities are innocent angels incapable of understanding violence, and (2) people with psych disabilities are unstable, potential murderers waiting to happen. We will find these narratives everywhere.

This is ableism.

(And often, in the wake of gun violence by white people, it's also the racist effect of white supremacy. No matter whether the murderer writes a terrifying manifesto against women or repeatedly espouses white supremacist causes before targeting Black people at prayer, white supremacy insists on exempting whiteness from violence by scapegoating the specter of madness instead.)

These lines have well-worn grooves in our newspapers and frequently-visited websites. They provide a familiar refrain, one that rips and breaks and tears at me.

Here, where those dead, injured, and left surviving, left reeling may well be disabled like me, I can't begin to respond. I don't understand this pain. But I know it. It's written all over me.

***

We have to hold space for each other.

Make space for us to relax. To heal. To dream. To mourn. To cry. To scream. To not have words. To feel empty. To process this jumbled fucking mess. To recover. To find new scars.

Ask us what we need.

Remind us that we are valuable, that we matter, that we deserve to exist, and more than that, that we deserve to exist in a world where we genuinely care for and about each other. Where our wobbly, sick, lopsided, drooling, asymmetrical, neurodivergent, mad, crip bodies are welcomed and loved and honored.

Join us in our struggles.

Morning, with its promise of familiar routine, waits for us.



"I want to believe in peace. I want to believe we can unlearn violence & affirm our interdependency. I dream of a community of lovers, who navigate pain, joy, laughter and grief together, collectively & with care; experiencing endless beauty. I think I am dreaming of a modern day heaven, or perhaps I am dreaming of the good we were meant to be."

Ki'tay Davidson, Why I Quit Philanthropy

#Justice2050 

Image Description (courtesy TL/Talila Lewis): Dark rectangle with the above quote and a photo of Ki'tay during a presentation to disabled youth. Ki’tay is smiling with an open mouth and snapping in celebration of a great comment by an audience member while facilitating a Disability History, Culture, and Pride workshop for youth with disabilities during the summer of 2014. Ki'tay is holding a microphone in his left hand and snapping with his right. He is wearing a black shirt, orange pants and a black hat.

16 November 2015

In Solidarity with Black Students at Georgetown University

Photo: Brick outside wall of the Intercultural Center (ICC) with chalk lettering that reads, "Black Students of GU, Your Allies Stand With You."

I did not write the text of the letter below the asterisks (and do not want to claim credit for the words -- it's circulating among many conscious and conscientious alumni), but I wholeheartedly endorse it as a non-Black alumn of color only recently removed from the Hilltop. I experience daily the damaging effects of white supremacy and structural racism as an East Asian person, but for precisely the same reason, I am also part of the many Asian American communities so frequently used in service of white supremacy. Asians like me continue to be offered the illusions of respectability and equality in the white supremacist system so long as we disavow and dissociate from Black, Brown, and Indigenous people. Racial justice demands solidarity -- recognizing that we must support and work alongside the Black, Brown, and Indigenous led movements fighting against the most overt and widespread state violence.

To any disability people reading this post who think this is a distraction, or irrelevant, or somehow losing a focus on disability -- stop. Stop with the single-issue politics. Disabled people of color -- and disabled Black people in particular -- don't have the luxury of pretending that we can engage with only one issue, one category of identity or experience. Our experiences with ableism are inevitably and inextricably intertwined with our experiences with racism. Racial justice IS disability justice, and disabled people of color must demand disability solidarity with Black-led movements.

To Georgetown University: Step up your game. Listen to your Black students -- my friends, my former classmates, my colleagues.  These are the moments that will mark our university's history for the next generation to come as either the institution that chose to make hollow, conciliatory gestures or the institution willing to embark on the infinitely harder path of self-examination and long-term, systemic change centered around the members of the university community most impacted by white supremacy.

***

Dear President DeGioia,

Georgetown University students of color, and our allies, have been watching closely this week as events unfold on college campuses around the country, from the University of Missouri, to Yale, to our own beloved Hilltop. Fueled by the momentum of the Black Lives Matter movement on the streets of Ferguson, Baltimore, New York City, and more, Black students are demanding action to ensure that systemic racism is addressed in all its forms, including within institutions of higher learning. This is undoubtedly a critical time for racial justice, and well past time for the Georgetown administration to take action to support its Black students.

We are deeply moved by this powerful Black-led student movement. Black students, and other students of color, deserve to feel safe at their place of learning. Moreover, Black students should not have to choose between their education and their physical, mental, and emotional safety. As the recent situation at the University of Missouri has demonstrated, Black students continue to bear this burden, often in the absence of support from their universities.

We urge you to support the Black-led student mobilization on our campus, and to take action ensuring that the demands of these students are heard, honored, and heeded. This is an opportunity to renew Georgetown’s commitment to cura personalis, and we hope you will seize it.

Sincerely,

Lydia Brown (COL 2015)

***

This is the text of the demands letter from the #BuiltOn272 movement ongoing now (the image at link below is not text-accessible):

(Letter visible at this Tweet.)

The broadcast from the president's office that was sent out earlier in the year ended with the statement; "This is what we do best as a university community: we come together to confront difficult events, learn from and with one another, and rely on the collective wisdom and resources of our extraordinary community to determine how we may best move forward toward justice and truth." The best way to move forward towards justice and truth is to take the demands set forth in this letter and implement them in an expedited and transparent manner.

1. Changing the name of Mulledy Hall, the Meditation Center, and McSherry Hall to reflect, center and honor the 272 enslaved Africans who were sold in the transaction and the countless people enslaved to the Jesuits prior to the transaction. We recommend that this can be completed by renaming Mulledy as "Building 272" and the remaining halls after any of the persons who were sold.

2. Plaques placed on all known unmarked graves on Georgetown University's campus honoring the legacy of enslaved people who contributed greatly to this campus.

3. Implement an Annual Program that honors the legacy of the enslaved people that continues to educate the Georgetown Community about the role and legacy slavery played in the creation and advancement of this University.

4. Revision of Official Georgetown Tours to include information about the sites and the history of the sites.

5. Endowment for the recruitment of Black identifying professors equivalent to the Net Present Value of the profit generated from the transaction in which 272 people were sold into bondage.

6. Mandatory training for all professors on how to engage and address issues of identity and diversity in their classrooms.

07 November 2015

#TheAbleistScript (The Original Tweets)

Content/TW: Institutionalization, sexual violence, gaslighting, other discussions of violence.

Graphic that says #TheAbleistScript

On Friday, I was fed up and pissed off at the everyday, casual ableism endemic to everything from pop culture and fandom to exchanges with total strangers and things that have happened to my friends and me. So I started tweeting under #TheAbleistScript -- both verbatim things people have said and paraphrases of what they're essentially saying. Then a massive shitton of fellow disabled folks picked up the hashtag and began joining in, which is awesome, but also meant I lost a lot of my own tweets (because Twitter can be really hard to navigate for me, for cognitive access reasons). So I've put up the original tweets that I put out here.

Follow the entire hashtag and some truly fabulous contributions here!









































































































Follow the entire hashtag and some truly fabulous contributions here!

13 October 2015

Court Hearing on JRC - October 26!

Content/TW: Fairly descriptive discussion of torture and abuse of people with disabilities using electric shock in an institution.



There is a court hearing about the Judge Rotenberg Center (JRC) scheduled to begin on Monday, October 26 in the Bristol County Probate & Family Court in Taunton, Massachusetts. Arguments are expected to continue for around a month. If you are able to attend part or all of the hearing, which is open to the public, please do so! We need advocates in the courtroom! 

(This post is an explanation of why this is important, what the hearing is actually about, and for the uninitiated, what the JRC is. It starts with some background about the JRC, then gives the legal context.)

Photo: Disability and youth rights advocates protesting aversive electric shock "treatment" outside the U.S. Food and Drug Administration (FDA) in Silver Spring, Maryland in January 2013. Hand-drawn signs have slogans "No compromise on torture," "people not experiments," "Ban the GED" with a list of minor infractions shocks are used to punish, "stop the shocks," "disability rights are human rights," and "torture not treatment." From left to right: Diane Engster, Lydia Brown, Shain M. Neumeier, Kathleen N. O'Neal, and Patrick T. Ayers. Photo by Taylor C. Hall, T.C. Hall Media.

Background

The Judge Rotenberg Center was originally founded as the Behavior Research Institute. It didn't start shocking people (as it is now infamous for doing) until 1988, but since its beginning in 1971, founder Matthew Israel instituted a regime of pain to coerce behavioral modification for the children, youth, and adults with intellectual, developmental, and psych disabilities committed to his "care." Food deprivation. Prolonged restraint. Seclusion -- which is ultimately a form of solitary confinement in the name of "treatment." Forced inhalation of ammonia. Sensory assault with the notorious white noise-blasting helmet. Slaps. Pinches designed to maximize pain by digging nails into muscle. Since 1971, six people receiving "treatment" at BRI/JRC have died in their care -- Robert Cooper (d. 1980), Danny Aswad (d. 1981), Vincent Milletich (d. 1985), Silverio Gonzalez (d. 1998), Linda Cornelison (d. 1990), and Abigail Gibson (d. 1997).

Brandon Sanchez was the first resident to be subjected to electric shock. The device was called the SIBIS -- self-injurious behavior inhibiting system. Although staff at BRI/JRC have long known that darkened, cool, low-stimulation environments help Brandon Sanchez self-regulate and decompress, they began to treat his extreme self-harm by shocking him under the belief that association of unwanted behavior with painful stimuli would decrease the unwanted behavior. (In other words, it's like applying dog training tactics to humans, or at least humans deemed sub-human.) On one day, he received over 5,000 shocks from the SIBIS in a single day. After that, Matthew Israel asked the SIBIS manufacturer to build a stronger device. They refused.

Matthew Israel invented his own device, the graduated electronic decelerator (GED), which emitted a stronger current and shock than the SIBIS. The GED works by strapping electrodes on a person's arms, torso, and legs, which are activated when someone presses a button on a remote control. Over the past couple decades, the GED has gone through several iterations, each more powerful and painful than before. The present model in use, the GED-4, is designed to be more powerful and painful than a police taser.

Theoretically, the "therapy" is used to reduce or eliminate dangerous or aggressive behavior -- like someone picking at their eyes and causing a vision disability, or someone banging their head against a wall and causing a brain injury, or someone physically attacking other people. In reality, the aversive electric shocks are given for behavior ranging from closing eyes while walking in the hallway to trying to hold a staff person's hand, or from getting out of seat without permission to using swear words, or simply for non-compliance.

In April 2012, a medical malpractice lawsuit brought by the family of Andre McCollins went to trial before a jury, where video footage of the shocks was played in public for the first time (photosensitive epilepsy warning -- video flickers / also graphic footage of torture at this link). Ten years before, in 2002, Andre McCollins, a black autistic teenager with other cognitive and psych disabilities, had been shocked 31 times in 7 hours while restrained face-down in four-point restraints. The long shock session stemmed from a brief verbal interaction with a staff person who told him to take off his jacket, and he dared to say, "No." The shocks are as much for "non-compliance" as they are for anything else.

Since 1971, dedicated advocates including titans like Nancy Weiss, Fredda Brown, and Polyxane S. Cobb have fought to close the JRC and end their abusive practices. Survivors like Jennifer Msumba and Ian Cook testified in front of the U.S. Food and Drug Administration. Disability rights organizations across the country have repeatedly condemned the JRC, along with the current and immediately former U.N. Special Rapporteurs on Torture. But legislation has never made it through the Massachusetts State House. Congress has never passed any measure that would ban aversives and dangerous restraints and seclusion. The U.S. Department of Justice civil rights investigation has produced no fruitful results. The FDA has never issued a decision after hosting a public hearing about the possibility of banning electric shock aversives.

And Massachusetts' regulatory agencies (Department of Developmental Services -- formerly Department of Mental Retardation, Office of Children and Families, etc.) have been almost totally unable to do anything about the JRC because of the Massachusetts courts.

(This explanation continues below the pictures.)

Further reading:




Photo [top]: Judge Rotenberg Center employee Joe Andrade adjusting the strap with shock electrodes on  Andrew Goldberg's ankle. (Andrew Goldberg was named as a resident with developmental disabilities in the Concord Monitor.) Photo by Charles Krupa, 2014.

Photo [bottom]: A Judge Rotenberg Center employee supervising a young student, who looks afraid, at a computer station. The employee's belt has at least four GED remote control activators hanging from it, each with a student's picture. Photo by Larry Sultan, 2007. 



Legal Context

In 1986, the Massachusetts Office of Children and Families tried to yank BRI's license to operate while issuing emergency orders essentially telling BRI to get its act together. In response, BRI sued the state government, accusing it of acting in bad faith and abusing its power to regulate by targeting just this one institution, and thereby violating the "rights" of students and parents for them to receive "treatment" at the BRI.

The case settled with a consent decree in 1987, which means that the court where the lawsuit was filed (Bristol County Probate and Family Court, as mentioned above) still has control of the case (as opposed to it being considered totally closed at the base court level). The consent decree was supposed to last for one year. It allowed BRI to keep operating as usual, but with one change -- if BRI wanted to subject anyone to invasive aversive treatments, it had to go to court and ask a judge to allow them to add the aversive treatments to the person's individual treatment plan. These special hearings are called "substituted judgment" proceedings, where the judge makes a decision about treatment based on what they think a disabled person would decide if they were "competent." (It's an incredibly ableist legal construct, but that's a topic for a whole other post.) In theory, those substituted judgment proceedings are supposed to be adversarial, meaning that the outcome could go either way -- maybe shock is added to the treatment plan, maybe not. In reality, since the institution of the consent decree, the judges in Bristol County Probate and Family Court have basically rubber stamped every BRI/JRC request to add electric shock to someone's treatment plan.

The consent decree was indefinitely extended, instead of ending in one year, and is still in force.

(BRI changed its name to Judge Rotenberg Center to honor the judge who oversaw the consent decree, once he died and it no longer looked totally weird to name the place after him.)

In the mid-1990's, the Department of Mental Retardation (now Department of Developmental Services) denied JRC's request for certification to use certain aversives, including the electric shock. So JRC went to court, and DMR was held in contempt. The commissioner was forced to resign. DMR was placed into "receivership," with an outside person appointed by the court to take over everything DMR did involving the JRC -- for ten years (1996 - 2006).

On 14 February 2013, the Massachusetts Attorney General's office filed a motion to vacate the 1987 consent decree -- if granted, the motion means that everything in the consent decree now becomes null and void, and the Bristol County Probate and Family Court will no longer have control of the case. The court also has the option of allowing the motion in part, but not in whole. Overall, this means that there is decent possibility that JRC could lose the protection it has enjoyed for almost three decades from the courts.

The hearing scheduled to begin on October 26 is an evidentiary hearing on the motion. The state attorneys will present evidence in support of their motion to vacate, probably by arguing that the consent decree is irrelevant both a) in regard to how the state's agencies regulate JRC, and b) what treatments are considered acceptable for people with intellectual, developmental, and psych disabilities. JRC's attorneys will of course argue the opposite. (Ugh, them.)

So if you live anywhere near Taunton or can get there, consider going to the hearing!