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:

• Atypical Autism Traits (gender neutral version)
• Real Social Skills
• I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults by Cynthia Kim
• Ask An Autistic by Amythest Schaber
• Who Can Call Themselves Autistic? 
• Autism Women's Network's Autistic Women Welcome Packet 
• Autistic Self Advocacy Network's Welcome to the Autistic Community Handbook

Literal Silencing

Trigger warning: Medical violence, abuse, ableism, profanity

Correction: The original version of this post stated that Kade Hanegraaf's surgery occurred at the University of Washington Hospital. The surgery actually took place at the University of Wisconsin Hospital in Madison, Wisconsin. Salon also published an article, quoting me actually, that contains more information from the surgeon.

Literal Silencing

Have you heard about Kade Hanegraaf yet? He's an autistic sixteen-year-old, who also has Tourette's, living in Appleton, Wisconsin, with his twin brother, Kyle, also autistic. And this week, the Wisconsin State Journal reported on a surgery forced upon him (link also has severe trigger warning) two years ago in 2011 at the University of Wisconsin Hospital that almost went unnoticed.

Almost.

One of Kade's tics is screaming.

His parents said of him, "It was absolutely horrific. We couldn't go anywhere." So they forced him to undergo surgery to silence him. To make him quiet. Good. Quiet. Good. Quiet. Good. Quiet. Good and quiet. Quiet and good. Good. And quiet. For them.

They made it about them. 

If screaming was a conflicting access need, there are other ways to address the issue than forced surgery. I've heard from other autistic people writing that they learned coping skills and ways to avoid some types of self-harming, for example, from other autistic people. Noticeably not from therapists, clinicians, or other professionals.

Was the screaming harmful to Kade? Did Kade want the procedure? Did Kade want to stop screaming? Even if the answers to these questions are yes, neither the news article nor the surgeon's published academic article (trigger warning on this article as well, and it's the full text as a PDF) mention anything whatsoever about seeking consent from Kade. 

(And yes, the surgeon, Dr. Seth H. Dailey, who teaches in the Division of Otolaryngology-Head and Neck Surgery, Department of Surgery, at the University of Wisconsin School of Medicine and Public Health. Despicable.)

They claimed the surgery was reversible. Who the hell knows? That may not be true, and even if it were, that doesn't justify performing surgery without the patient's consent.

The surgery was performed because Kade was an inconvenience to his parents.

...

...

...

I haven't done math in years, but the calculus seems to go a little like this:

Inconvenience + legally enforced power = medical torture

Solution: Justified.

...

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...

This is torture. To invade someone's body in total violation of their bodily autonomy and perform nonconsensual, involuntary medical procedures on the whim of another person for what amount to purely cosmetic purposes.

But because Kade is autistic, anything goes. Anything is treatment. Anything is permissible. His body is not his own; it belongs to his parents. His life is not his own; it belongs to his parents. His very existence is a burden and must be dealt with accordingly. If he creates further inconvenience beyond existing, he can be, quite literally, silenced. He is not a human being with autonomy, agency, and the ability to communicate consent or lack thereof.

His communication doesn't matter. His parents did not choose to engage in communication with their son. Instead, they chose to physically, medically, pristinely, callously, clinically cut out his voice from his throat.

...

...

...

This is morally reprehensible. It ought to be appalling to anyone with even the most minute conscience or shard of empathy for fellow human beings. It is horrific and hideous. It is the epitome of selfishness on the part of the parents. This is an outrageous violation of human rights and bodily autonomy, and there is no conceivable justification for any of this.

But if we can be silenced in public discourse, erased from academia and scholarship, segregated in special education classrooms and residential treatment centers and institutions, hidden in sheltered workshops, and objectified as passive recipients of services and treatment and a future cure for who we are...

Then why not literally silence us?

Why not?

...

...

...

Assault the subaltern, those who have no position whatsoever to challenge structural power, because you know we can't fight back. We must submit, quietly, without protest, to the surgeon's hands, to the parents' unilateral, selfish decisions, because we have no agency, we have no feelings, we have no choice, we have no ability to make a choice, we have no self, we have no being, we have no voice, we have no humanity, we are nothings, not-humans, simply occupying space and lucky if we are ignored as we usually are anyway.

It's when we're noticed that it's dangerous, because if we're noticed, we can be stamped out of existence, and I mean that deathly deathly deathly literally because our lives are disposable. (even especially especially especially by doctors)

I think about Kade in that operating theater and I want to cry but I already spent part of yesterday crying and I've already overused my quota because I'm not a Real Person so I don't get to cry...

And I wonder if it felt like this?

Course you gotta be strapped down and your head put in one of those things and bright lights white walls blah blah. Arms bound with thick leaden cloth. Spread like an angel. Keiya is compliant. She's always been a patient like that, so good so good, with the nurses and caregivers cooing at her like an obedient pet. 

The doctor motions. Keiya spreads her arms wide. 

I, too, am an unclaimed colony.

(Meda Kahn's "Difference of Opinion" has got to be some of the best fiction I've read about an autistic character. Part of the reason for "best" is probably "realistic." Not just with the autistic, but also what happens. How Keiya is a thing to be controlled, a thing to be made submissive, a thing to be made compliant, a thing that has to be fixed, to have an adjustment, if it ever lays claim to self.)

...

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...

It's obviously not harm if it's done to an autistic. Autistics aren't people. Doctors can't harm autistics; everything is for their good society's good their parents' good everyone's good, good, good, good.

Autistics are things objects subjects problems burdens threats fantasies fictions creatures animals things things things things things not-people things things things things things not-people things things things things things.

...

...

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But if we have no voices why not cut out the vocal cords because we have nothing to say we've never had anything to say we'll never have anything to say and even if on the off-chance we say something it means nothing nothing nothing so no problem, whoop-dee-doo, cut out them vocal chords and yay, problem solved for those Good Patient Saintly Normal People putting up with the burden of disabled existence.

Silence is their reward.

...

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...

You can reach the surgeon at dailey@surgery.wisc.edu. Be nice. After all, he's a Person, capital-p, and we're just manipulable, pliant things.

I'd say, fuck all of the people involved, but my voice isn't a real voice can be silenced all the damn time doesn't have to be listened to doesn't have to exist doesn't exist doesn't exist doesn't exist doesn't

People's Coverage of Issy Stapleton's Story

Trigger warning: Discussion of violence against disabled people, murder of disabled people, mention of rape, ableism, and ableist rhetoric about violence. 


Note: I noticed it's actually Issy (with a y). I wrote Issi (with an i). I apologize for my inability to spell.

__________

This is from a letter that I wrote to an editor of People magazine who is also a Georgetown alumn:

I am currently writing regarding People's coverage of the Issy Stapleton case. Issy's mother is currently facing charges of attempted murder, and is being held without bail in the case while Issy is hospitalized with injuries sustained during the attempted murder.

The magazine currently on news stands across the country contains a blurb on the cover that reads, "Autism, Violence & Despair: A Mother's Breaking Point." It breaks my heart and those of so many people in the autistic and disabled communities to continually see such rhetoric in the news, in popular media, and in public discourse.

It is incredibly common for journalists and policymakers alike to assert directly or imply through their reporting and language that when parents kill or attempt to kill their disabled children, it is because the child was a burden on the family, because the child didn't receive services -- any reason other than that the parent decided to harm their child. 

The disparity is very striking when you read coverage of killings and attempted killings of non-disabled children by their parents. Right or wrong, headlines decry such parents as monsters and their actions as evil. Yet when the victim is disabled, as in Issi's case, we are urged to be sympathetic to the aggressor rather than to the victim. The media so often plays directly into this attitude by reporting on all of the reasons that the parents were supposedly overwhelmed and stressed and therefore justified in harming their children.

These cases happen all the time. They are not novel or isolated. They are connected by a powerful and pervasive set of ideas that form the public attitude toward disability -- that disabled people are burdens on society and their families, that disability means less quality of life and less ability to be happy, that it is better to be dead than disabled, that when disabled people are murdered, it is out of mercy and love, and it is our lives that are tragic and not our murders.

These stories should be talked about. We don't want our victims to be forgotten. But I am continually appalled and profoundly saddened to see that the pattern of reporting about these cases remains the same -- always offering justifications and excuses for murder while suggesting, horrifyingly, that if I object to this type of coverage, I am somehow lacking in empathy. I think it is not unreasonable to believe that victims of violence deserve empathy, but the kind of rhetoric exemplified on the cover of People right now only serves to constantly reinforce that I and people like me are not in fact worthy of the same consideration as non-disabled victims of murder and other types of violence. Instead, it is the perpetrators who should receive sympathy. 

Only this week, yet another case following the same pattern has hit the news. Two children, Jaelen and Faith Edge, were found dead after their mother killed both of them and made an apparent attempt at suicide. One of the children was autistic, and much of the reporting around this case too has fallen into the same old pattern of blaming autism and the supposed burden of living with an autistic child as the cause behind the violence.

I cannot go more than a few weeks without hearing of another case in which a disabled person -- child, youth, or adult -- somewhere in the world has been murdered, raped, or assaulted because of the attitude that disabled means less than. The media has a particular power to shape and influence rhetoric, and therefore ideas and attitudes. With this power comes great responsibility. I urge you to do everything that you can to combat this insidious and deadly trend in popular news reporting.

We deserve better. We deserve nothing less.

Critiquing Temple Grandin

Trigger warning for ableism.

--

Temple Grandin. Image description: A headshot of an older white woman with very short, somewhat curly, brown but graying hair, looking directly at the camera. She is wearing a cobalt blue collared shirt and a silky black scarfy tie thing. Behind her is a wooden fencepost with rope draped over it.


Temple Grandin is widely recognized as the world's most famous autistic person. She's written a number of books about autism, regularly travels around the globe to give talks at conferences, and was even the subject of a documentary on her early life (eponymously titled Temple Grandin). Other autistic people, as well as folks outside the community, have written on a number of aspects of the troubling things that Temple has said or the way in which she is positioned in rhetoric on autism both in broader society and within our own community.

I have several criticisms of both Temple Grandin's positioning as well as her positions.

Because Temple Grandin is functionally the world's only famous autistic person (and certainly the most famous), what she says about autism is taken as gospel, regarded as absolute truth, and frequently generalized as if representative of the experiences and views of every other autistic person on the planet. This is despite the fact that her experiences are inextricably linked to her race, her class, and the time period during which she came of age -- not to mention the inevitable tensions that come with being the first widely-recognized autistic to speak on an autistic experience.

What Temple Grandin has said about autism is frequently extremely ableist, classist, and otherwise very problematic. Because of her prominence on the world stage, her international acclaim, and her extremely high levels of visibility and name recognition, her ideas have proliferated quite abundantly. Yet this is also due in part to the fact that her positions render her an acceptable autistic, a well-behaved autistic willing to conform to hegemonic normative standards and compliance as ethics. In other words, Temple Grandin's articulated ideas about autism and autistic people fit into the pathology paradigm that dominates autism discourse.

Temple Grandin is frequently tokenized or used as a nice window-dressing -- to borrow Jim Sinclair's term, she is frequently paraded at mainstream autism conferences and symposia as a self-narrating zoo exhibit. Because she is autistic and her statements align with those articulated from an ableist sensibility, neurotypicals advancing the views that autism presents a problem of pathology can claim authenticity or legitimacy for their position through Temple Grandin's reiteration of the same sentiments.

Temple Grandin believes that "high-functioning" autistics are talented, intelligent, and necessary to human survival, while "low-functioning" autistics cannot function or live independently, and thus should be cured in the present and prevented from existing in the future. Both I and others have thoroughly deconstructed the false dichotomy of high and low functioning, but suffice it to say that such claims not only reinforce ableist hegemony, but also reinforce a capitalist notion of success and value in that only people who can produce are worthy of inclusion in society; all others are burdens.

Her belief that nonverbal autistics are tragic and pitiable evokes a sense of moral disgust and outrage, particularly when coupled with the many voices of nonspeaking autistics demanding a claim to voice, to agency, to capacity -- asserting competence, self, and pride.

Her belief that the only autistics who ought to be considered valuable and thus valued are those who have a job and learn to function within neurotypical norms is colored inescapably by classism and ableism -- the very systems of oppression that serve so frequently to reinforce the violence of capitalism.

Her belief that autistic children should be conditioned to normalize their behavior, communication, and movements for the sake of indistinguishability alone is profoundly ableist and disappointing, especially when considering the long history of violence exacted against disabled people for the crime of failing to uphold hegemonic standards of normativity.

Temple Grandin poses an answer to the question of whose bodies/minds ought to be valued and whose ought to be discredited and removed for the good of society. Her answer is a deeply disturbing one, and must concern those of us who wish to see the deconstruction of societal ableism, because both her own rhetoric and how she is rhetoricized serve only to perpetuate it.

What is a shiny Aspie?

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

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

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

Things to know.

Questionnaire on Disability for the GUSA Executive

Here at Georgetown, it's election season for the President and Vice President of the Georgetown University Students Association (GUSA), our student government. When the candidates and their running mates were announced last week Thursday, I sent each pair of candidates a six-question survey on disability issues. Here are the six questions (together, uninterrupted) and then each question itemized with its respective responses from four of the five candidate pairs (Spencer and Rob, Jack and Maggie, Shavonnia and Joe, and Nate and Adam) who submitted responses. Their responses are verbatim, including typographical errors.

I will be publishing my own responses and follow-ups to these questions and the candidates' answers within the next couple of days. Stay tuned! 

Lydia
Autistic Hoya

______________________________________________________________________

7 February 2013

To:       Spencer Walsh and Rob Silverstein

Jack Appelbaum and Maggie Cleary

Shavonnia Corbin Johnson and Joseph Vandegriff

Nate Tisa and Adam Ramadan

William Cannon Warren and Andrew Logerfo

Questionnaire on Disability for the GUSA President and Vice Presidential Candidates

1.) Several disabled students, representing a variety of different types of disability groups, have left Georgetown after experiencing extreme hostility from administrators, faculty, staff, and or students.[1] What would you do or change to combat ableism (disability oppression, prejudice against the disabled) and make Georgetown a more welcoming and inclusive campus for disabled students if elected?[2]

2.) Most conversations about diversity at least minimally address race, gender identity/expression, sexual orientation, religion, class, and age, and increasingly, are including status (i.e. citizen, resident, undocumented, etc.).[3] Disability is rarely included in these conversations despite its inclusion in a list of protected classes in Georgetown's equal opportunity and anti-discrimination statement.[4] In fact, when disability is discussed at Georgetown, it is usually in a highly medicalized context that pathologizes disability and assumes it is a health issue rather than a social issue and a diversity issue.[5] What would you do if elected to ensure that conversations and initiatives on diversity meaningfully include disability?

3.) Georgetown was the first university in the United States to hire a full-time imam as Muslim chaplain (Yahya N. Hendi). Georgetown was also the first Catholic university ever to open an LGBTQ Resource Center. We also host the Center for Multicultural Equity and Access and the Women's Center. Yet there is not currently a Disability Cultural Center on campus.[6] Syracuse University was the first university ever to open a Disability Cultural Center, followed by the University of Washington, Seattle. I am leading a committee of students and community members working to gain support for the establishment of a Disability Cultural Center on campus to celebrate disability pride and power, culture and community.[7] If elected, would you advocate on behalf of a plan to create and sustain a Disability Cultural Center at Georgetown?

4.) The outgoing GUSA executive represented a significant shift in encouraging more women to take on leadership roles in student government at Georgetown with the first ever women pair as President and Vice President, and the largest proportion of women in the executive branch ever. What will you do, if elected, to increase visibility and representation of disabled students (both with apparent and invisible disabilities) in leadership roles on campus, whether in GUSA or elsewhere?[8]

5.) Georgetown's campus is incredibly inaccessible for disabled students from a variety of disability groups. As highlighted in a November article from the Hoya,[9] students with physical disabilities and motor impairments continue to experience significant barriers in navigating campus. Less frequently discussed are other barriers to equal access for students with neurological, psychiatric, developmental, intellectual, sensory, or learning disabilities.[10] What would you do if elected to investigate the full range of accessibility barriers at Georgetown and advocate for meaningful progress from the administration in addressing them?

6.) Conversations about disability that occur in classes, student organization sponsored events, departmental sponsored events, and administration sponsored programming frequently omit the perspectives of disabled people both during the planning process and during the actual event[11], while the few events that do meaningfully incorporate disabled people throughout the process receive far less publicity or attention from the campus community than other diversity-related events and often occur in fairly cloistered settings[12]. What would you do if elected to advocate for meaningful inclusion of disabled people in conversations about us on campus?

I would like to publish responses to these questions to Autistic Hoya[13]. Otherwise, if there is objection, I will publish them via Facebook and other social media. Your time and consideration in providing written answers by February 13^th, 2013 is greatly appreciated.

Regards,

Lydia Brown (COLL ’15)

lydia@autistichoya.com

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[1] Two of these students were interviewed for my article “Disabled Hoyas Suffer From Prejudice, Not Impairment” in the Winter 2013 issue of the Georgetown Independent. One is Blind and Autistic; the other has bipolar and anxiety. Anecdotally, I know of several other incidents involving disabled students who chose to leave the university.

[2] Further evidence of an environment hostile to disabled members of the community is the reticence of many members of the Georgetown community with invisible or non-apparent disabilities to identity as disabled or having a disability—in some cases, the reticence is extreme. One Georgetown staff person told me that she felt it would be absolutely unsafe and uncomfortable to disclose her disabilities to her coworkers. One of the students who left Georgetown whom I interviewed said that Georgetown was an incredibly hostile place to be a disabled student, and that she would not feel safe identifying as disabled. The other student whom I interviewed said that while his blindness is apparent, he refused to disclose that he was also autistic for fear of retaliation and increased harassment.

[3] The “Big 7” identities in diversity discussions are usually given as gender identity, race, (socio-economic) class, sexual orientation, disability, age, and religion.

[4] The four available websites for candidate pairs (www.jackandmaggieforgeorgetown.com, www.nateandadam.com, www.shavonniaandjoe.com, and www.spencerandrob.com) all include position statements about social justice, diversity, or pluralism, but not one includes disability, never mind meaningfully addresses any disability-related issues, such as increased accessibility, disability empowerment, visibility of disabled leaders, hiring of disabled faculty, expanding Disability Studies course offerings and programming, disability cultural activities, etc.

[5] A recent op-ed published in the Voices section of the Georgetown Voice entitled “Psychology Student Psychologically Scarred by Psychos” exemplifies ableist bigotry against disabled people as well as the medical model exclusive approach to framing and discussing disability-related issues.

[6] A Disability Cultural Center does not provide the same types of supports and services as a disability support office (the Academic Resource Center). It is primarily a diversity and cultural center analogous to the others on campus.

[7] The Disability Cultural Center Planning Committee has our Facebook page at https://www.facebook.com/pages/Georgetown-University-Disability-Cultural-Center-Planning-Committee/466471490051398 and may be launching a dedicated website for the initiative during the spring 2013. We are in the process of drafting our formal report and proposal for the administration, student body, and the broader Georgetown community.

[8] As far as I am aware, there is scant representation of disabled people—either with visible or invisible disabilities—across student organizations, leadership initiatives, or GUSA itself, if any at all.

[9] See the article “Progress is Slow on Disability Access” on the Hoya’s website at this URL http://www.thehoya.com/news/progress-is-slow-on-disability-access-1.2945552#.URNdN2ekMis. Note that the article exclusively focuses on access as an issue relevant to physical disability, and does not address access needs related to any number of other types of disabilities.

[10] For example, classrooms that only have fluorescent lighting may be inaccessible to people with sensory processing difficulties. Fire alarm systems that use high-frequency flashing lights are extremely dangerous and potentially fatal for people with photosensitive epilepsy. Students with severe sensory issues regarding food or the environment may be unable to eat in Leo’s, but the process for obtaining a rare medical exception from the mandated meal plans during the first two years is not transparent or even conveyed to most first and second year students.

[11] For example, in November 2012, Dr. Thomas Insel (Director of the National Institutes on Mental Health) delivered a talk on autism in Gonda Theatre. No autistic members of the Georgetown community were included in discussions prior to inviting Dr. Insel despite the fact that his views and priorities on autism research do not represent those of autistic policy advocates and activists. In another example, in February 2012, when the Psi Chi Psychology Honors Society hosted a panel originally titled “Multiple Perspectives on the Autism Epidemic” that included five non-autistic speakers until I approached the event organizers and demanded autistic representation.

[12] For example, events hosted by Diversability, the student disability awareness forum, are generally far less well attended than events hosted by other diversity-related organizations. In another example, in fall 2012, the Academic Resource Center co-hosted an event with the DC Metropolitan Business Leadership Network on employment for people with disabilities. Based on the roster of attendees sent around afterward, less than five students with disabilities were in attendance, and perhaps as few as two were Georgetown students. 

[13] www.autistichoya.com or Autistic Hoya is my website/blog, where I typically write on disability politics and policy, the disability civil rights movement, critical disability theory, neurodiversity, the autism rights movement, Autistic culture and identity, and intersectionality.

______________________________________________________________________

1.) Several disabled students, representing a variety of different types of disability groups, have left Georgetown after experiencing extreme hostility from administrators, faculty, staff, and or students. What would you do or change to combat ableism (disability oppression, prejudice against the disabled) and make Georgetown a more welcoming and inclusive campus for disabled students if elected?

Spencer and Rob: The goal of a University is to provide an opportunity for people from a variety of backgrounds to come together and learn — not just about the world but also about each other. Harassment and hostility directed against anyone at Georgetown is unacceptable and Spencer and Rob will work tirelessly to promote a Hilltop that is unified in our diversity. This is one of the reasons why we decided to run on the theme of one Georgetown.  We believe that diversity must encompass people with disabilities and we will make including liaisons to disabled students a key point of emphasis in building our administration. More broadly, we support a comprehensive audit — including GUSA and the University administration — of Georgetown’s accessibility for disabled students and how to overcome institutional prejudice against the disabled.  Moreover, we think that Georgetown should particularly look into how buildings can be adapted to better take into account the needs of those with disabilities.  

Jack and Maggie: It is absolutely unacceptable for any administrator, professor, student or other member of the Georgetown community to make disabled members feel marginalized or unwelcome in any way. Our platform hinges on ensuring GUSA can provide solutions for any problems that students face on campus, and we would approach those of disabled students no differently. We would actively engage the students most knowledgeable about the challenges disabled students face in order to identify concrete solutions to actively change the campus culture towards disability and provide new resources and benefits for disabled students. By recognizing the importance of pluralism in our platform, we will be able to welcome members of the disability community into discussions they have not been a part of previously.  Disabled students will see an ally and a resource in the student association, something they hope they will utilize to address the challenges they face on campus.

Shavonnia and Joe: One concrete thing we can do right of the bat is making Georgetown more accessible for the physically disabled. In our budget we have already allocated funds to make Georgetown more handicap accessible.  We would also like for our secretary of diversity to put a strong emphasis on disability as well as making sure to emphasis it in Pluralism in Action. How Pluralism in Action is currently structured we address racial, religious and sexual differences, but addressing the presence of disabilities on campus is neglected.  We believe having a campus wide dialogue about these issues will greatly increase understanding and foster a more receptive atmosphere.

Nate and Adam: We will reach out to professionals in the field such as Christina Nicolaidis and Dora Raymaker (Co-Directors of the Academic autistic Spectrum Partnership in Research and Education) amongst others. This will start the conversation on campus and raise awareness of the issue. Even though we recognize that just raising awareness isn't the solution, it is a very important first step towards achieving our final goal of making Georgetown a more welcoming and inclusive campus for disabled people, at least from an administrative end.


2.) Most conversations about diversity at least minimally address race, gender identity/expression, sexual orientation, religion, class, and age, and increasingly, are including status (i.e. citizen, resident, undocumented, etc.). Disability is rarely included in these conversations despite its inclusion in a list of protected classes in Georgetown's equal opportunity and anti-discrimination statement. In fact, when disability is discussed at Georgetown, it is usually in a highly medicalized context that pathologizes disability and assumes it is a health issue rather than a social issue and a diversity issue. What would you do if elected to ensure that conversations and initiatives on diversity meaningfully include disability?

Spencer and Rob: Diversity does include disability and a sense of social justice must include opening doors for students, which as The Hoya article you reference points out, is both a literal and metaphorical issue at Georgetown. In roundtables on diversity issues, we would seek to include a disabled perspective, making whatever accommodations are necessary to attract their input. We would also work with leaders like Lydia Brown to assess our progress in outreach and to better inform our perspective on this issue. We would be open to having a disability roundtable to discuss accessibility and access issues, as well as the social elements of disability, with disabled and other concerned students in the first month of our term.


Jack and Maggie: The GUSA executive can make strides to change the campus culture pertaining to students with disabilities in a more inclusive way by highlighting pluralism.  First and foremost, our administration would be focused on developing an executive branch that is fully representative of the Georgetown community.  Additionally, by highlighting pluralism instead of diversity, we can more adequately address the needs of disabled members of the Georgetown community. Traditional conceptions of diversity often neglect those who are disabled. By highlighting pluralism, we will demonstrate that Georgetown is diverse in many ways, but that it is vital that all members of the Georgetown community appreciate and respect that diversity. The pluralism summit we propose will include disabled members of the community. We also plan to actively coordinate student input on future building on campus. With a campus already inaccessible for those suffering from physical disabilities, we will ensure all new building is adequate. Furthermore, we plan to reform the bias incident reporting system to ensure the interface is more user-friendly, the university is responding appropriately with education, and the campus is alerted of bias-related incidents, all which should and will include students with disabilities.

Shavonnia and Joe: In our platform we have stated that we want to create awareness of the vast amount of diversity that we have on campus. Furthermore, we would be more than willing to help promote events created by all minority groups, which includes disability groups. We would love to allow for these students flier exclusively from the GUSA office and add their events to our weekly emails.

Nate and Adam: Not long ago members from the LGBTQ community were regarded as psychologically ill, and issues addressing them were highly medicalized. Having gone through this, it is impermissible for members of the LGBTQ community to allow fellow human beings to suffer from this sort of discrimination. This is a social issue that needs to be addressed; we will work towards including disability in all of our conversations and initiatives regarding diversity.

3.) Georgetown was the first university in the United States to hire a full-time imam as Muslim chaplain (Yahya N. Hendi). Georgetown was also the first Catholic university ever to open an LGBTQ Resource Center. We also host the Center for Multicultural Equity and Access and the Women's Center. Yet there is not currently a Disability Cultural Center on campus. Syracuse University was the first university ever to open a Disability Cultural Center, followed by the University of Washington, Seattle. I am leading a committee of students and community members working to gain support for the establishment of a Disability Cultural Center on campus to celebrate disability pride and power, culture and community. If elected, would you advocate on behalf of a plan to create and sustain a Disability Cultural Center at Georgetown?

Spencer and Rob: We believe that a Disability Cultural Center could complement the work of the Academic Resource Center and support its creation in some form. We believe that such a Center could have a joint mission of advocating for disabled students and providing a space for social events and engagement within the disabled community. Such a project will require a serious investment of University time, employees, facilities and financial resources, so we will begin the conversation immediately.

Jack and Maggie: We perceive GUSA’s role to be helping students achieve solutions to any problems they face on campus and empowering them to take action on their own by connecting them with the other students passionate about their cause and administrators who can be helpful. As a result, we would actively work with the committee of students and community members by providing GUSA support and resources to a Disability Cultural Center. We would hope that this office would be able to support programming, work with the Academic Resource Center, address challenges that physically disabled students face getting around campus, and work with Counseling and Psychiatric Services (CAPS) to better support students that face mental health challenges.

Shavonnia and Joe: Absolutely. We have actually questioned why there was not a disability center already at Georgetown. We would definitely advocate for the creation of a disability center and even search for space for this center. We are aware that there are some vacant offices on Leavey 4 and we would take is as a personal tasks to aid in the creation of this center. We want GUSA to represent the student population. Without a doubt, there are students with disabilities on this campus and at this present time they are being underrepresented or not represented at all.

Nate and Adam: Most definitely! Just as we are advocating on behalf of other diversity initiatives like the Center for Multicultural Equity (CMEA) and the Diversity Action Council (DAC), we plan to increase institutional and financial support for the Disability Cultural Center, especially for something so closely linked with our Jesuit Values as the promotion of a more inclusive Georgetown.

4.) The outgoing GUSA executive represented a significant shift in encouraging more women to take on leadership roles in student government at Georgetown with the first ever women pair as President and Vice President, and the largest proportion of women in the executive branch ever. What will you do, if elected, to increase visibility and representation of disabled students (both with apparent and invisible disabilities) in leadership roles on campus, whether in GUSA or elsewhere?

Spencer and Rob: Both of us are strong supporters of increasing diversity in all of its forms, including among disabled people, whether there disabilities are apparent or invisible. We will appoint a disability liaison, preferably a disabled student, to coordinate our outreach and our initiatives to improve accessibility and experience for disabled Hoyas. We will also encourage programming similar to the “Elect Her” conference, which focused on electing women to student government, that would specifically focus on disabled students.  It’s time that Georgetown finally provided a center within the university for those with disabilities. 

Jack and Maggie: We envision an executive branch representative of the entire student body, disabled students included. Beyond that, much like Clara and Vail did with other communities on campus, we will encourage disabled students to get involved in other initiatives, like running for the GUSA Senate, serving on various advisory boards or committees, and taking an active role in student engagement on campus.

Shavonnia and Joe: No student should be dismissed or not considered for a leadership role because of a disability. To increase students with disabilities in leadership positions we will actively seek out and recruit students from all minority groups, including the disabled, to join our executive.

Nate and Adam: We will engage the disabled community when selecting cabinet positions and when making decisions regarding diversity initiatives, thus increasing the visibility and representation of disabled students on campus.

5.) Georgetown's campus is incredibly inaccessible for disabled students from a variety of disability groups. As highlighted in a November article from the Hoya, students with physical disabilities and motor impairments continue to experience significant barriers in navigating campus. Less frequently discussed are other barriers to equal access for students with neurological, psychiatric, developmental, intellectual, sensory, or learning disabilities. What would you do if elected to investigate the full range of accessibility barriers at Georgetown and advocate for meaningful progress from the administration in addressing them?

Spencer and Rob: We would demand the University expand and fully fund the Academic Resource Center, while ensuring that their interactions with students with neurological, psychiatric, developmental, intellectual, sensory, or learning disabilities is sensitive and appropriate. We will work with leaders on campus and disabled students to leverage their voices and raise awareness, forcing the administration to come to the table. We also believe that a nascent Disability Cultural Center or project would be able to work closely with the ARC in shaping its approach to tackling all accessibility barriers at Georgetown.

Jack and Maggie: There are a number of steps our executive would take to advocate for meaningful progress in barriers to access on campus. First, we plan to add a cabinet position for housing and facilities. This student could work with disabled students on campus to address challenges that exist around campus, such as inoperable handicap buttons on doors and staircases that do not have adequate alternatives. Additionally, we would hope to leverage the work students are already doing in developing a Disability Cultural Center and the structure established with the student committee in order to generate student feedback and empower passionate students to address the most pressing problems.

Shavonnia and Joe: To address the physically handicap there are various procedures we would take. We have allocated money in our budget to implement ramps in places like the main door of Reiss and inside of Copley, where it is not easily accessible for wheelchairs.  We would be interested in starting up a working group to look into accessibility issues and work to put pressure on the administration to ensure equality for all students.

Nate and Adam: Regarding people with physical disabilities and motor impairment we will introduce and advocate for inclusive housing options and handicap-accessible housing. For students with neurological, psychiatric, developmental, intellectual, sensory, or learning disabilities we will further develop the Safe Spaces Initiative. We were one of the primary movers on this program, which was introduced to the GUSA Senate and Executive in March 2012.

6.) Conversations about disability that occur in classes, student organization sponsored events, departmental sponsored events, and administration sponsored programming frequently omit the perspectives of disabled people both during the planning process and during the actual event, while the few events that do meaningfully incorporate disabled people throughout the process receive far less publicity or attention from the campus community than other diversity-related events and often occur in fairly cloistered settings. What would you do if elected to advocate for meaningful inclusion of disabled people in conversations about us on campus?

Spencer and Rob: Just as you cannot have a serious discussion about issues important to women in a room comprised totally of men, discussions of disability must include disabled people. In the planning process, events must consider how to make accommodations to cover the full range of neurological, psychiatric, developmental, intellectual, sensory, and learning disabilities as well as a location in a space accessible to physically disabled people. Beyond that, efforts must be made to include disabled students on the agenda and events that originate among disabled students deserve to be extensively advertise. As GUSA executives, all of our events will follow this framework and our executive will reach out to disabled students to ensure that their voices are heard.

Jack and Maggie: Accessibility for campus events is vital to making them open and welcoming to all members of the Georgetown community. From Jack’s experience on SAC reviewing student organization events, he knows the importance of making them accessible and recognizing the challenges that different members of the community face. As GUSA executive, we will actively work to incorporate disabled members of the community in discussions about programming and traditional events. This will hopefully be a process that can be centralized in the Disability Cultural Center. As our platform displays, we will make sure GUSA is prepared to address any  problem or challenge students face on campus and empower them to find solutions on their own with the support of the student association.

Shavonnia and Joe: As stated previously we would love to include the disabled community in our efforts to help promote diversity groups to the rest of campus. We would also work to link the disabled community with the campus discussion by working with administrators to figure out when these events are going to happen and ensure the inclusion of the disabled at the events. 

Nate and Adam: We will engage the disabled community when making decisions regarding diversity initiatives and advocate on behalf of a plan to create and sustain a Disability Cultural Center. This way, the perspectives of disabled people will be taken into account when planning these programs, and will give the community more access to the administration.