Ordinary Lives

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

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

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

I'd forgotten that I'd written that.

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

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

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

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

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

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

An Apology (of sorts)

Trigger warning: Religion (Christianity specifically), fundamentalist Christianity, Evangelical Christianity, Pentecostal Christianity, spiritual abuse, proselytizing and conversion (as a topic)

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I was raised for as long as I can remember in the Assemblies of God church.

If you're not familiar with the name, the Assemblies of God fall under the Pentecostal/charismatic umbrella, and were founded in the early twentieth century. AG is one of several denominational groups associated with dominionist theology, the Christian Right, and fundamentalist Christianity. It's also the young earth creationism teaching church affiliated with the camp portrayed in Jesus Camp, the abusive residential treatment center/troubled teen industry placement Teen Challenge, and the anti-gay, heterosexist organization Focus on the Family.

I was christened as a baby in the Assemblies of God.

I was baptized by water immersion at thirteen years old in the Assemblies of God.

I was part of the Missionettes program, the AG alternative to the secular Girl Scouts, from kindergarten through seventh grade.

I've always owned a Bible and it was always natural to me that we went to church every Sunday, tried to encourage our friends to come with us, and talked about everything and everyone in terms of God's will.

I am a Christian. My faith is important to me and is central to my work as an activist and a scholar. But I've come to learn over the last several years that the Christian faith as the Assemblies of God understands and demands it is not the same as the Christian faith as I have come to understand it.

And after reading some articles and essays that I'd somehow never stumbled across earlier, I've realized that I still have a lot to apologize for, because there's still a lot that I've taken for granted and a lot that I've never quite owned up to.

To the Buddhist in my second grade class whom I told believed in "a false religion" and "a false god" and should turn to Jesus instead, I'm sorry for so brazenly de-legitimizing and attacking your own beliefs and religious heritage while demanding that you convert to mine, and I'm sorry that so many Christians essentially believe and teach young children that it is their duty to see their friends and acquaintances as conversion projects.

To the first openly Gay person I ever met, I'm sorry for immediately thinking of you as essentially a project to be developed into some type of pious Christian even though I never believed people could suddenly become not gay, and I'm sorry that so many Christians believe and teach their children to believe that you can't be gay and Christian, that gays are damned to hell forever, that being gay is wrong, and that being gay is something you can be "healed" of through enough prayer and self-hatred.

To every Muslim in the entire world ever, I'm sorry for wanting to go into the field of Islamic Studies with the hope of finding some kind of mystical "connection" between your faith and mine so that I could claim at least some of you as Christians in some unconventional and certainly appropriative and condescending way, and I'm sorry that so many Christians believe and teach their children to believe that you are all following a "perverted" religion, that you are going to hell, and that you can only be saved if you convert to Christianity.

I don't know if I'm a religious pluralist in the sense of believing that everyone or most people will attain the spiritual "goal" or telos of my faith -- in layman's terms, in the sense of believing that belief in a specific religion isn't how you "get to heaven." On the one hand, it seems incredibly exclusionary and judgmental (in the sense of acting as though one is God and can judge another person's character) to claim that only people of a particular faith (including, by inference, people who've done pretty horrible, awful things) will "go to heaven." On the other hand, it seems almost appropriative or irrational to claim that anyone can "go to heaven," particularly when the notion of "heaven," however argued or conceptualized, is often specific to a particular religion's understanding of "heaven," and is not even the end goal for many religions.

But I do believe in the right to absolute bodily, spiritual, and mental autonomy, and to the absolute right of freedom to worship (or not), and it deeply saddens me to realize that essentially my entire childhood consisted of constant indoctrination to see everyone around me as either "in" the community or "outside" and therefore a prospect for conversion. This is astounding.

It is tantamount to child abuse to inculcate a sense of absolute fear of disobedience or disrespect, however ill-defined, toward church authority either in tangible form (such as church leaders) or abstract form (the concept of the church as an authority itself). If children are not taught to be inquisitive, to question, to criticize, to reason, to understand, then their supposed Christian education amounts to brainwashing. And training children to believe that their goal in all of their relationships, if any, with non-Christians ought to be for the ultimate purpose of conversion, no matter how beautified or justified the language, is not only abusive to that child themself but also preparing that child to enact spiritual violence against people with whom they might have wanted some kind of meaningful relationship that will now forever be damaged if it exists at all.

How would you feel if you found out that someone had befriended you solely to slowly wear you down into agreeing to attend religious services with them and ultimately to convince you to convert to their religion? (Unless you for whatever reason made an emotional and spiritual conversion to that religion, and even then, not necessarily) I doubt you'd feel grateful or comforted or reassured or satisfied. I'd bet you'd feel used and deceived and objectified in the most gross sense of the term.

The parent of an autistic young woman in another Evangelical family once told me that they had heard from the Holy Spirit that she would be "healed" of her autism soon. Other autistics have been subjected to exorcisms under the premise that autism, like other mental  disabilities, is caused by demonic forces. At least one young man died several years ago during such an exorcism.

I'm sorry for every time I nodded with implied assent because I was afraid that if I spoke up, I would be quickly and definitively silenced.

I'm sorry for all of the collective and individual abuse on so many levels of oppression that so many Christian churches and Christians themselves perpetuate.

I'm sorry for not speaking loudly enough against the hate spewed so loudly and powerfully in politics, culture, and society by members of my faith.

I'm sorry for whatever hurt and pain I've caused to others in my oblivion to your wounds and to my essentially rubbing salt in them.

I didn't always know.

I wasn't always sorry.

But I'm aware now. I'm so very aware.

And I want to do whatever I can to make up for all of it, because no one deserves to be used, either to convert other individuals or to bolster church attendance numbers, either to hurt other people or to suffer pain for the sake of someone else's agenda. That's not the kind of world I want to be part of, and I believe strongly that that's not the kind of "religion" that any just or loving god(ess) would ever want.

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.

حقوق أشخاص معاقين والرعاية الصحية

حقوق أشخاص معاقين والرعاية الصحية

ليديا براون

معظم الناس يظن أن أشخاص معاقين لا يستطيعون أن يقررون لنفسهم بسبب المعوق خاصة في الرعاية الصحية. عندما قوانين تتوقف أشخاص معاقين من يقررون لنفسهم عن الرعاية الصحية ﺗرسل رسالة كمجتمع الذي أشخاص معاقين ليست متساو. هناك فكرة في مجتمع أن أشخاص معاقين ليست ذكي أو لا يعرف أي أشياء عن العالم من حولهم أو لا يفهم نفسهم. بعد "ساندي هوك" كثير من الناس أراد أن يجعل مجتمعاتهم أكثر أمانا ولذلك بسبب فكرة أن أشخاص معاقين أكثرعنفا من بقية مجتمع كثير من الناس يريد قوانين لتقصر حقوق أشخاص معاقين عندما يطلب الرعاية الصحية. هذا الناس يظن أن أشخاص مع الإعاقة النفسية سيكون عنفي واكثر عنفي من أشخاص بدون الإعاقة ولذلك من اللازم أن يشارك معلومات خاصة عنهم بين الأطباء والشرطة ليصون بقية مجتمع.

في الشهر الماضي كان هناك جلسة استماع في الكونغرس في مدينة واشينجتن عن قانون خاص إسمه "HIPAA" الذي يصون معلومات خاصة عن الرعاية الصحية وعلاج لكل أشخاص وخاصة أشخاص معاقين وأشخاص مع الإعاقة النفسية. كل أعضاء كونغرس إلا واحد وكل شهود إلا واحد قال إن هذا القانون خطر لمجتمع لان وأشخاص مع الإعاقة النفسية خطر لمجتمع ومن اللازم أن الشرطة لتعرف كل معلومات عنهم. القانون عنده سابقا استثناء لخطر عامة ولكن تجادل هؤلاء الناس أن مثل خطر موجود بدون دليل لدعمه. في كل أدب العلماء هو مكتوب أن أشخاص مع الإعاقة النفسية أقل عنفي من أشخاص بدون الإعاقة وأن كل أشخاص معاقين وخاصا أشخاص مع الإعاقة النفسية أكثر عرضة ليكون ضحايا العنف.  

هذه السنة أيضا قريب من عيد الفصح كان حادثة أخرى مع شخص معاق مشهور إسمها أماندا باجس عندما كان من اللازم أن تذهب إلى المستشفى قريب من بيتها في ولاية فيرمونت. بعض أن ذهبت إلى المستشفى أحد من الأطباء جاء إلى غرفة أماندا وقال إنه سيكون من اللازم أن تقرر موت بدلا من العلاج الطبيعي فقط بسبب معوقها. (أماندا توحدية مثلي.) كان هناك خبر هذا مارس  عن تمييز على أشخاص معاقين في الرعاية الصحية من جمعية حيث أعمل وهذه الحالة ليس فريدة وتحدث كل الوقت عبر البلد وفي كل العالم. الفكرة موجود في مجتمع أن حياة أشخاص معاقين أقل قيمة وأقل مستحقة وأقل جيدة من حياة أشخاص بدون الإعاقة بسبب المعوق. كلنا نعرف وإلا. من الممكن أن تكون حياتنا جيدة وسعيدة وعندما  نعاني السبب موجود في مجتمع وفي تمييز علينا وليس بسبب المعوق. إذا نعاني ونعاني كل الوقت فنعرف السبب. عندما معظم جيراننا يظنون أننا أحسن ميت من عيش عندنا مشكلة.   

كأشخاص معاقين نعرف أننا ليس عندنا نفس الحقوق كجيراننا ونعرف أيضا أنه معظم المجتمع لا يظنون أنه مشكلة مع ذلك موجود. الﻣﺤﺪﺛﺎت عننا تحدث عادة بدوننا ومعظم المجتمع لا يشدون المشكلة. إذا أشخاص بدون الإعاقة ظنوا أن لا نستطيع أن نقرر لنفسنا وأن لا نستطيع أن نفهم نفسنا فالأزمة ما زالت موجودة. ما زال نموت في المستشفيات وما زال نعيش مع أسر متعسفة وما زال نذهب إلى السجون ونعاني هناك وما زال موجودون بدون حقوق أو حماية   من القوانين. عندنا أزمة اجتماعية وثقافية. مشاكلنا ليست طبية ولكن اجتماعية.  نحتاج القوانين لتدعم موقفنا في مجتمع ولتوقف الاعتداء والتمييز.

Belated Updates from Finals Hell Week

Given that it's currently three a.m. and I have finals to be studying for and papers to be writing, it's only natural that I'm posting things here.

About a month ago, I delivered an address co-sponsored by the Neurodiversity Working Group and the Student Assembly on "Politicized Disability and the Crisis of Disabled Oppression" at the College of William and Mary for their annual diversity week.

They had prepared a spiffy poster!

Image description: It's a vertical poster with a background consisting of a photograph of what appears to be a stone-inlaid patterned walkway with brick arches facing outward on the left side in a row and brick niches on the right side in a row with black wrought iron gates between them, all headed toward a set of double doors painted a light brown or mustard yellow with six square windows in a rectangular shape on each door. At the top of the poster, somewhat translucent all-caps letters say "Politicized Disability and the Crisis of Disabled Oppression" over two lines, followed by  a horizontal bar and then a much larger all-caps font reading "Lydia Brown." The whole poster has a double-line border around the edges, with a diagonal banner going upward to the right edge of the poster from the center with the text "I Am W&M" in bold black all-caps letters on it, seemingly pointing at a framed headshot of a young Asian woman with shoulder-length black hair and glasses, wearing a beige pantsuit with a lapel pin in the shape of Massachusetts colored with the American flag (blue field and then red and white horizontal stripes) on her left lapel, a multicolored beaded necklace, round gold earrings, and a red round-neckline silky shirt. Beside this framed shot, which is to the left side of the poster, there are more lines of text that say "4/8 | 7PM" and "Commonwealth Auditorium." At the bottom, to the right side of the poster, there are two circles. The one on the left has a black outline and a white background and the word "Neurodiversity" with "neuro" in a mustard yellow font on one line and "diversity" in a forest green font on the following line. The one on the right has a thinner black outline and the words "The College of William & Mary" following the circle on the upper side and "Student Assembly" on the lower side, with the white letters S A cutting through a dark green and mustard yellow background. Wow that was a long image description. 

After the talk, they also took this spiffy picture with the folks who organized the talk (and a student who attended). From left to right, they're S.R. Salas (Community Liaison, College of William & Mary Neurodiversity Working Group), me, Karin Wulf (Associate Professor of History and American Studies), Jake Lewitz (Secretary of Health and Safety for the Student Assembly), Maggie Skorup (President of Campus Buddies and the Undersecretary of Disabilities), and Tony Song.

Image description: Six people standing in a line facing the camera with an auditorium's wooden stage, several rows of black cushioned chairs, and podium with a William and Mary insignia on it visible behind them. From left to right, a white woman with shoulder-length, wavy blond hair, a white sweater unbuttoned over a shirt with black and white horizontal stripes, a black wristwatch on her left hand, and a cream/ivory colored skirt; and then an Asian woman with short black hair and glasses wearing a black pantsuit and red shirt with a multicolored bead necklace as she folds her hands in front of her; and then a white woman with very short blond hair wearing a tan-colored suit jacket over a white dress shirt and black pants; and then a white man with a peach-colored collared button-down dress shirt, a dark-colored belt, and light-colored pants, who is folding his hands loosely in front of him; and then a white woman with blond-brown hair tied back wearing a collared white dress shirt over blue pants and a dark-colored wrap sweater; and then an Asian man with short black hair wearing a powder blue t-shirt over white or light khaki colored pants, who has his hands in his pockets.

Unfortunately, no one actually recorded the talk, but Ariel Cohen of Flat Hat News, the William and Mary student newspaper, did write an article on the lecture. (For the record, I don't remember ever using the word "affliction," but, okay.)

After that, I made a brief trip to the College of New Rochelle in New York State (Westchester, to be exact, definitely not the actual NYC) to participate in a panel on "Perspectives on Autism Advocacy." They had a pretty spiffy poster, too, though:

The image description for this would actually be incredibly long, so I'm placing it at the bottom of the entire post after everything else. 

This panel was recorded, so you can find the entire one hour and fifty minute video on YouTube. (I've asked two awesome Autistic friends who're actually good at transcribing to transcribe the entire video so it can be accessible to more people, so will post again when that's up.) The lighting quality isn't that great, but it's audible for hearing folks. The folks from left to right in the video are Jennifer Scuro (Associate Professor of Philosophy), me, Lisa Quintones-Fontanez, Marjorie St. Hilaire, and Edie Barasch.

At the event, I actually ran into an old friend from the New England Young Writers Conference at Breadloaf (from 2010, seriously), who happened to be taking the philosophy of education course taught by the professor responsible for organizing the panel. Go figure, small world. (Yes, she was there to attend the panel.)

In any case, I traveled at the end of the month to Seattle to deliver an invited lecture at the University of Washington for the D Center (disability and deaf cultural center) on the same topic as the paper I presented at the Debilitating Queerness symposium here at the University of Maryland, College Park. Titled "Deconstructing Rhetoric on Disabled (A)Sexuality," I discussed the compounded oppressions faced by folks who identify on the asexual spectrum, especially if they are also disabled, and advanced the argument that asexuality should be reconsidered in light of critical queer and disability theory. (The D Center attempted to film the talk, but there's still doubt over whether or not the footage will be usable, though they did have it CART-captioned, and are working on the transcription. I'll be sure to post that when it's available.)

I couldn't find any photos from the event, even though I know they were taken (hint, hint!), but I do have a few photos from the rest of the Seattle-trip-that-turned-into-a-Portland-trip.

Here's one of Shain Neumeier and I the night I arrived in Seattle, after being thoroughly confused and disoriented by Seattle's incredibly cognitively inaccessible "public transportation system." We're sitting in Il Fornaio, a restaurant serving delicious Italian food. This was actually a horrible photo taken on my phone, so I attempted to use some Photoshop on it.

Image description: Two people facing the camera photographed from about headshot view. The one on the left is a young Asian woman with short black hair curling around her chin, wearing glasses and a dark-colored lanyard over an orange t-shirt as she smiles toothily at the camera. The person next to her is leaning on her shoulder, and is a young white person with short blond hair and black-rimmed glasses, also smiling, wearing a white t-shirt. Behind them are stylized light fixtures in box shapes, and a bar with a waiter wearing white very far in the background. 

Before leaving Seattle for Portland, we grabbed this photo of myself at a fountain, which I admittedly wanted solely to have a pretty photo for Facebook. Vain and trivial, I know.

Image description: The photo is centered on a young Asian woman crouching atop the flat surface of a stone with water over its top. Her black hair is almost shoulder length and curves around her face. She has dark eyes and glasses and is crooking a smile that reveals part of her teeth. Her head is slightly tilted as she faces the camera. Her hands are loosely clasped with elbows resting on her thighs as she crouches. She is wearing a maroon t-shirt with a graphic in white ink and text that isn't actually legible. (It says "Organizing autistic people is like herding cats" and "Autreat 2004 making connections.") She's also wearing a black-colored fleece with a zipper but unzipped, blue jeans, black socks, and worn black loafers. She's crouched on one gray stone of many of varying heights, all with flat surfaces in varying stages of wet, in a circular formation around a fountain and pool with two oblong-ish sculptures that sort of resemble towers but with weird angles and curves not quite straight, where the water flows from. This is in an outdoor area with some shrubbery visible behind the fountain along with a Starbucks.

Then Shain and I obtained sourdough starter and baked our own gorgeous and gigantic loaf. It's beautiful. It also tasted beautiful.

Image description: It's a photograph centered on a round metal pan mostly overshadowed by the gigantic round loaf of bread, sitting on top of a beige and speckled marble counter, with the edge of a pink box visible on the left and a black coffeemaker and glass kettle in the top left corner, and various other implements unidentifiable behind that.

And finally, we made a visit to the famous Powell's Books!

Shain wrote this about our visit (and also wrote the following image description):


Lydia and I went to Powell's Books while she was out here. After dorking out in the huge sci-fi/fantasy part of the store, we decided we should check out how awful the autism-related books were (bad sign: they're all in the parenting and psychology sections. Because of course it's not like they're going to have a disability rights, culture or identity section or anything). The intent was to find pretty awful books and get them out of there before some unsuspecting parent, professional, spouse or other nonautistic person could come across them and rely on them. Thing was, there were too many of them for us to afford by the end of it (and these are only the MOST awful ones that are depicted here). The awfulness ranged from inspiration porn to woo-woo dietary and anti-vaxxer stuff to books that included how to chelate your child. We ended up buying about 6 of the very worst of the worst. (Hey, at least they're used! Well, most of them...).

Image description: A young Asian female-presenting person with short straight black hair, small square-ish glasses with black frames, a blue tee-shirt, black pants and black close-toed shoes lies on her side between two brown book shelves with a number of books of different sizes and colors on them. She is smiling upwards at the camera but also flipping it off with both middle fingers. She is lying behind 38 books lined up in rows (of 9, 8, 9, 8 and 4, from back to front) books about autism. The titles of the books are difficult to read, but they include: The Age of Autism, Preventing Autism, The Soul of Autism, The Autism Puzzle, Autism Heroes, The Empty Fortress by Bruno Bettelheim, A Real Boy, Mental Retardation: Nature, Cause and Management, My Friend Has Autism, Without Reason: Mother Warriors by Jenny McCarthy, Personality Development in People with Mental Retardation, In-Home ABA Programs, Finding Ben, The Only Boy in the World, and Dietary Interventions for Autism Spectrum Disorders.

Yes, seriously, they had Bruno Bettelheim and Jenny McCarthy in here. Yes. Seriously.

And yes, that is a picture of me flipping off the ableist bullshit and woo.

And now, in the absence of a transcript from Seattle or a transcribed video from New Rochelle, both of which I promise to post when available, it's time to return to finals hell.


_____________________________

Here's the missing image description for the CNR panel poster (and yes, I promised this was long:

It's a white poster designed for regular letter-sized paper. At the top there is a horizontal purple box with white font that says "The College of New Rochelle" in mixed case on the first line, followed by "Autism Education Week" also in mixed case on the second line, followed by "April 24-26, 2013" in mixed case and a smaller font on the third line, all center-aligned. Below this box in black all-caps font, it reads "WEDNESDAY, APRIL 24, 2013." Below that in a larger purple mixed-case font, it reads "Panel: Perspectives on Autism Advocacy," and below that in black mixed-case smaller font, "Romita Auditorium, Mooney Center @ 6:30 p.m." 

After that, there's a right aligned framed photograph with text to the left. The photograph is a small square outlined with a thick purple line, and is a headshot of a young Asian woman with short black hair and glasses, faced slightly to the right, mouth open in speech, wearing a dark blue woolen coat with wide collar, a beige suit jacket, a cobalt-blue lanyard, and an ochre (dark orange) shirt. She also has a round sticker with white background and indiscernible design on her right lapel. The text to the left is headed by a purple mixed-case font that says "Lydia Brown / autistichoya.com" and smaller mixed-case font beneath that reading "is an Autistic and multiply-disabled disability rights activist, scholar, and writer. She is a Project Assistant for the Autistic Self Advocacy Network, and serves as Undersecretary for Disability Affairs at Georgetown University’s student government executive branch. She is also a member of the Board of Directors of TASH New England, the National Council on Independent Living Youth Caucus, and the Georgetown University Center for Excellence in Developmental Disabilities Consumer Advisory Council."

After that, there's a left aligned framed photograph with text to the right. The photograph is a small rectangle, close to square-dimensions, outlined with a thick purple line, and is a headshot of two smiling people leaning in toward each other and the camera. On the left is a young boy, possibly Latino, with short brown hair wearing an orange false turtleneck or cowl neck shirt. On the right is a young Latina-presenting woman, much older than the boy, with dark brown hair swept back, wearing a denim collared shirt and hammered steel earrings in the shape of leaves. The text to the right is headed by a purple mixed-case font that says "Lisa Quinones-Fontanez / autismwonderland.com" and smaller mixed-case font beneath that reading "is a secretary by day, grad student/blogger by night and Warrior Mami round the clock. She blogs regularly on babble.com and on her blog, autismwonderland.com. She was recently nominated for Yahoo’s Women who Shine Award and was named LATISM’s 2012 Best Health Blogger. AutismWonderland is one of Babble’s Top 30 Autism Blogs for Parents for 2012."

After that, there's a right aligned framed photograph with text to the left. The photograph is a small square outlined with a thick purple line, and is a headshot in black and white of a middle-aged Black woman with short hair and small metal ring earrings, wearing a sleeveless shirt with ruffles all around the collar as she smiles at the camera. The text to the left is headed by a purple mixed-cased font that says "Marjorie St. Hilaire" and smaller mixed-case font beneath that reading "is a certified school psychologist and New Rochelle resident who has been working with ASD youngsters since beginning of her career. In addition to bridging the home and school to help support “the whole child,” her knowledge with this population ranges from preschool to adolescent. Her role within the school system is to increase awareness of this population within the mainstream school environment, advocate and implement best practices, and to optimize the student with ASD to his or her fullest potential."

After that is center aligned text in the same purple mixed-cased font that reads "with Edie Barasch, Chairperson," with only the word "with" appearing in black, followed by purple text reading "Committee on Preschool Special Education, City School District of New Rochelle," and on the same line, gray text reading "an early childhood special educator, educational leader, and parent of an adult child with autism. She was an adjunct instructor at the CNR Graduate School on subjects related to special education and disabilities from 2002-2004, an active member of the New Rochelle SEPTA, and co-founded the “We Are One” Award." 

After that is center-aligned text in mixed-case gray letters that reads "Hosted by the Provost of The College of New Rochelle" on one line and "For more information, please contact Jennifer Scuro (jscuro@cnr.edu) or Ruth Zealand (rzealand@cnr.edu)" on the following line. Below that is larger mixed-case black font that says "Free and open to the public. Light refreshments at 8:45 p.m." Below that is another purple box with white font inside that reads in mixed-case  "The College of New Rochelle, 29 Castle Place, New Rochelle, NY 10805 • www.cnr.edu • info@cnr.edu"

I told you it was an obscenely long image description. 

decadence and frivolity

street signs flicker and burn in stunning neon colors
where some are tacked to crumbling bricks and gaping pain
and some cast shivering shadows over the lapping waters,
their light wavering through the fog and slicked with rain.

"I wish you hadn't come here."

he lives in a disintegrating cardboard box beside an overpass,
and sometimes you can see his fingers jutting toward strangers' faces
as they hurry past with harried glances caught in storefront glass,
unwilling to linger long in such crowded, lonely places.

"It's not a good place for you to be."

i heard you screaming when the windows shattered
and i know you well, so i know how much you shook,
and i know how your breath came short and shafted,
and i know how long it might have been before you could look.

"It would have been better if you'd left me alone, I think."

she dreams of beer-stained wood and aching jaws,
and babies' screams and sweat clinging to summer skin,
and beautiful brown flesh and fingers bloody and raw,
and fights to keep the fermenting fear-ache within.

"I suppose I'm afraid I'll die here, you know."

and what was i supposed to do when there were only pennies left,
and even gods and goddesses might have laughed at our misfortune
as you sidled from the door to silent, darkened streets cleft
between misery and monotony in ever-present social burdens.

"But everyone dies eventually, and death is no great concern of mine now."

they walk with heavy steps in a strange kind of shuffle
while the chains of leg irons clink against one another,
and try not to think too hard of the coming struggle,
not reassured by promises they'll remain together.

"There are so many other things to worry about in life."

we live in a world of wonderment at ten thousand dollar dresses
and two hundred story towers housing titans of power and wealth.
we live in a world of bewilderment where casual violence stresses
the ambiguity of normativity on either side of breath and death.

"You can keep your pity for yourself — I don't need it."

where the humming fan drowns out the screaming behind closed doors
and carefully tended smiles hide the knowledge in bloodied clothes and hands,
where lurching, over-sweetened perfume does little to smother the corpses,
this is where the ghosts of cruelty lie and where empty houses stand.

"I think you should go now."

"I think it's already begun."

Erasure and Silencing by the Omicron Pi Chapter of Alpha Kappa Alpha

Trigger warning: Ableism, Autism Speaks, erasure, silencing, profanity.

--


On Monday of this week, I discovered the following event page had been posted to Facebook:

Autism: Putting the Pieces Together

EVENT: Autism: Putting the Pieces Together
The Alpha Kappa Alpha Sorority, Inc. Omicron Pi Chapter will be holding an event in honor of Autism Awareness month, and will have a guest speaker from Autism Speaks.
Don't miss out on what promises to be a great event!

Image description: The header has a blue background and says in a script font, "In honor of Autism Awareness Month, Alpha Kappa Alpha Sorority, Inc., Omicron Pi Chapter presents..." Then the rest of it is a white background with a watermarked red, blue, and yellow puzzle piece design, with text overlaid that says the following:
"Autism: Putting the Pieces Together
with a representative from Autism Speaks
April 24, 2013 at 7pm
Georgetown University: New North 412
This event is open to students from Catholic, Georgetown, and Trinity Washington
Did you know:
- Autism now affects 1 in 88 children and 1 in 54 boys
- Autism is the fastest-growing serious developmental disability in the U.S.
- There is no medical detection or cure for autism"

 By Shauntell Lamatrell Pinckney, Alexandra Tucker and Breania Smith

     [When]
    Today
    [Time]
    7:00pm
[Where]  
New North 412

[Description]
    Did you know ...
Autism now affects 1 in 88 children and 1 in 54 boys
Autism prevalence figures are growing
Autism is the fastest-growing serious developmental disability in the U.S.
Autism costs a family $60,000 a year on average
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Boys are nearly five times more likely than girls to have autism
There is no medical detection or cure for autism

In response, I sent an email to the event organizers, who organized this event on behalf of the Omicron Pi chapter of the Alpha Kappa Alpha sorority:

Dear Shauntell, Alexandra, and Breania,

As an Autistic woman of color at Georgetown University, I am incredibly disappointed that a sorority originally founded to empower Black women has chosen to support the organization Autism Speaks. Autism Speaks is an organization that has very little support from actual autistic people, does not include autistic people anywhere in its leadership (Board of Directors or administration), engages in fear-mongering and pity-based advertising for "awareness," and works toward goals that fly in the face of what Autistic disability activists actually want for ourselves and our community. Autism Speaks is roundly criticized in the Autistic community, and definitely does NOT speak for us. 

I am a person, not a puzzle. 

I am Autistic, and I can speak for myself. 

I have, in fact, written extensively about the problems with Autism Speaks on my personal site:

• http://www.autistichoya.com/2012/03/responding-to-autism-speaks.html
• http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html
• http://www.autistichoya.com/2012/11/protesting-autism-speaks.html
• http://www.autistichoya.com/2012/07/how-autism-speaks-must-change.html
• http://www.autistichoya.com/2012/09/what-they-should-be-talking-about.html
• http://www.autistichoya.com/2012/09/image-description-autistic-hoya.html

If you wish to support the autistic community, there are many worthwhile organizations to support that do not promote the fear-mongering and pity-based advertising that paints autistic people as tragedies as puzzles but that do actually support and empower actually autistic people. Some of those organizations include the Autism National Committee, the Autism Women's Network, the Autistic Self Advocacy Network (full disclosure -- ASAN is my employer), the Autism Network International, TASH, the American Association of People with Disabilities, or the National Council on Independent Living. 

I would be more than happy to discuss this issue further, but I cannot in any way, shape, or form condone any form of support or validation of Autism Speaks and their harmful, dangerous practices. I strongly encourage the Omnicron Pi chapter of Alpha Kappa Alpha to reconsider its support of Autism Speaks and to host events that promote real dialogue about autistic people with autistic people rather than lending credence and a platform to Autism Speaks's oppressive and ableist rhetoric. 

Regards,

Lydia Brown

______________
Lydia Brown

www.autistichoya.com

lydia@autistichoya.com

M: [redacted]

P: [redacted]

"Evil is not the absence of righteousness but of empathy."
— Mohsin Hamid

This message is intended for the designated recipient(s) only. It may contain confidential information or be subject to confidentiality protections. If you are not a designated recipient, you may not review, copy, or distribute this message or any attachments. If you have received this message in error, please notify the sender by reply e-mail and immediately destroy this message and any attachments. Do not retain, copy, or use this e-mail or any attachment for any purpose, nor disclose any part of the contents to any other person by any means.

I had also posted a one paragraph abbreviated version to the public Facebook page as follows:

Lydia Brown

7:42pm Apr 22

As an Autistic woman of color at Georgetown University, I am incredibly disappointed that a sorority originally founded to empower Black women has chosen to support the organization Autism Speaks. Autism Speaks is an organization that has very little support from actual autistic people, does not include autistic people anywhere in its leadership (Board of Directors or administration), engages in fear-mongering and pity-based advertising for "awareness," and works toward goals that fly in the face of what Autistic disability activists actually want for ourselves and our community. Autism Speaks is roundly criticized in the Autistic community, and definitely does NOT speak for us. I am a person, not a puzzle. I am Autistic, and I can speak for myself.

Lydia Brown
lydia@autistichoya.com

Autistic Hoya: Responding to Autism Speaks www.autistichoya.com Autism Speaks routinely excludes Autistic people from discussions about us, and to date, has not one...

Today, I discovered that my wall post had been deleted from the Facebook page without comment or private message. Needless to say, the email that I sent also did not receive a response.

As a result, I am writing about this publicly. This was not my first course of action. My first course of action was to post a brief note on the Facebook event page directly for the organizers and anyone else to see; my second course of action was to contact the event organizers directly. However, their choice to passively avoid acknowledging my email as well as their choice to actively erase my message on the Facebook page have left me with no alternative but to broadcast this publicly.

It is shameful that representatives of a sorority founded by and for women of color have chosen to engage in such appalling erasure and silencing techniques. At a minimum, they could have chosen to acknowledge my email, however succinctly or tactlessly. Instead, they chose to disregard my email and remove my wall post, neither of which were outright attacks on the sorority or the event organizers, but rather, statements about the organization Autism Speaks. Further exacerbating the seriousness of this situation is that I wrote explicitly as an Autistic person, a woman of color, and a Georgetown University student in both my email and Facebook message, and yet my perspective has been disregarded without any acknowledgement whatsoever. It is particularly egregious that people who are already multiply-marginalized by virtue of being women of color have chosen to commit the same types of injustices regularly perpetrated against them against someone from another marginalized population.

I should hope that if an event were hosted by a group of white people discussing issues facing people of color in a highly problematic way, any attempt by actual people of color to contact the event organizers would not be met with the same humiliating erasure and silencing tactics that AKA's representatives have used here. Yet I know without a shadow of a doubt that if that were to happen and those people of color were to write publicly, anywhere, about such erasure and silencing, even people outside the community would be appropriately bothered and disturbed, while those genuinely interested in actively supporting and empowering people of color as allies would be outraged.

At the same time, I know that this is not the case because this is autism and I am Autistic. Therefore, my voice doesn't count, and if I am capable of writing an email message (and going to Georgetown), I am obviously "too high-functioning" to matter or mean much. After all, only non-disabled people could possibly be capable of speaking on behalf of the poor, wretched persons who happen to live with the diagnostic label of autism.

Autistic people, writ large, do not want to be cured of being autistic any more than women want to be cured of being women. The problems and challenges that we face in society across the lifespan do not occur because of the ways in which our brains work, but because of institutionalized oppression that dehumanizes us and permits murder, torture, and abuse to occur in the name of care, love, and treatment. The solution to the puzzle of autism is not a cure; it is an end to ableism. Autism Speaks's rhetoric of fear, pity, and tragedy serves a eugenics agenda with the elimination of autistic people as its ultimate goal. I don't know about you folks, but I would like very much to see my children grow up in a world where there are people like them, where they aren't pathologized and told to hate themselves, and where institutionalized oppression doesn't impact every waking moment of their lives. That is not the world that Autism Speaks wants, and actually Autistic people know this very well. 

Yes, I am upset. This is happening at my university.

Fuck. No.

I refuse to be erased.

I refuse to be silenced. 

I am Autistic, and I can speak for myself.

Autism Speaks does NOT speak for me, and if anyone cares to dispute that, feel free to explore the vast array of essays, blog posts, and videos that actually Autistic people have made and written over a period of years to expose the many criticisms of this hypocritical and dangerous organization that has blood on its hands.

Why I'm Afraid of Doctors

Trigger warning: Ableism, disability slurs (specifically, the r-word), profanity, violence, and medical malpractice/bad medical situations.

This is a piece that I performed for Saxa Slam 2013 and Diaspora 2013. I wrote this in response to what happened is happening to Amanda Baggs, for those who've been following the story. 

Image description:
A young Asian woman with chin-length straight black hair and rounded rectangular glasses from about the waist up appears in the center of the photograph. She is speaking, with her lips open mid-word, looking into the distance at something past the camera. She is wearing a light pink collared button-down untucked dress shirt with ivory translucent buttons, a black suit jacket unbuttoned with a small circular white pin on her right lapel, and light olive green pants. She also has a blue lanyard around her neck with the words "UNH Institute on Disability" printed in a sans serif font in white, as well as a thin white string with a plastic name badge holder with a white name badge that says "Lydia Brown" in big letters in the middle and "Commitment to Diversity Awards 2013" in smaller letters on the top, as well as a chain with a silver shield pendant and a black pen hanging from it. Her left hand is tucked in her pocket and she is wearing a gold and silver chain-link bracelet. her right hand is holding two sheets of white paper in front of her with no text visible to the viewer. She is standing in front of a wooden paneled wall, with the bottom part of a large projection screen visible behind her, where a blue background can be seen.

 Why I'm Afraid of Doctors

Doctors are supposed to save lives, that’s the oath they take.

Hospitals are supposed to be where anyone can know they’ll be safe,

Where you could be Barack Obama or Paris Hilton or Osama,

And it wouldn’t matter, because doctors are there to save your life and make sure you’re okay.

But let’s talk about what happened Easter Sunday, two thousand thirteen. 

Let’s talk about what happened to my friend, Amanda Baggs.

Amanda Baggs, published author, nationally known activist, pioneer of Autistic rights, Autistic culture, Autistic community

She went to the hospital

She had gastreoperesis, something I don’t quite understand, but I know because she told me, told the whole community, that all she needed was a feeding tube so she wouldn’t die

Standard procedure

No big deal

Then the doctor came to her room

Tried to tell her not to go through with it

Tried to tell her to consider the alternative

And you know what the alternative means?

When they say, consider the alternative, what they’re really saying is, your life really isn’t worth saving, so instead of waiting for the operation you should get around to starting dying

She almost died

The doctors, the ones who’re supposed to save Amanda’s life, almost murdered her

Because she’s autistic. Because she’s disabled. Because her life isn’t worth saving

And you know, it only became worth saving when hundreds of us who care called and called and called and told the hospital 

No You Cannot Do That

No You Cannot Murder Amanda Baggs

No You Cannot Kill People Just Because They’re Disabled

No You Are Wrong

So they did the operation and they did it without anesthesia

They said squeeze our hand if it hurts and she screamed

She fucking screamed

And they didn’t care

And they kept going

And they didn’t even have the decency to give her the right pain meds after

And her abled, typical roommate was fine

But Amanda wasn’t

"The fuck’s a retard like me matter anyway?"

And the sad thing, the funny thing, you know, is Amanda’s one of the lucky ones

Because people like her, people recognize those names

So they’ll call the hospital, tell those bastards where they can put it

For her

The rest of us, people like me, most of my friends

If it happens to us, who’ll ever know?

They’ll kill us with the machinery that’s been grinding on for years, specializing in ending disabled lives because we’re not human, we’re subhuman, we’re burdens foisted on societies and families undeserving of our pitiful existences.

They’ll murder us.

And who will listen?

The fuck retards like us matter anyway?