Tagged with " autism"
Apr 13, 2018 - Physical Ed    No Comments

Still Shocking

CONTENT WARNING: physical abuse and torture

GED device like the ones used by the Rotenberg Center.

On Thursday, April 24, 2014, the FDA held a hearing to decide whether it’s okay to shock autistic people into submission. They held another hearing in 2016. It’s 2018 now, and the shocks haven’t stopped.

The Judge Rotenberg Educational Center In Canton, MA administers strong electrical shocks (60 volts and 15 milliamps) as part of its “aversive therapy” to prevent students from self-harm and aggression, though in reality, records show that they’re applied for as little as blowing spit bubbles or standing up. Children as young as nine years old receive this torture, which Dr. Ivar Lovaas saw as a logical extension of his ABA therapy, which many autistic people already consider a form of torture.

Still shot of video showing Andre McCollins being shocked.

The Center has been subject to a number of scandals, including the deaths of several patients in the 1980s and ‘90s. In June 2012, videotape was released to the media, showing JRC student Andre McCollins being restrained for over seven hours. In that time, he was shocked 31 times for infractions such as “tensing his body and yelling.” JRC spokespeople maintained that it was part of his court-approved treatment plan, but it left him hospitalized in a catatonic state for five and a half weeks. The UN later ruled that the incident fit their definition of torture.

The JRC claims that aversive therapy produces marked behavior modification. They maintain that, “Without the treatment program at JRC, these children and adults would be condemned to lives of pain by self-inflicted mutilation, psychotropic drugs, isolation, restraint and institutionalization—or even death.”

Ultimately, the FDA advisory panel recommended that all of these devices be banned. Some suggested that there should be a six-month period for “tapering off,” as if electric shocks are a medicine from which you must withdraw slowly or experience severe side effects. Even this qualified decision was a narrow one: only 60 percent of the panel approved the ban recommendation.

One of the most disturbing parts of the FDA panel in 2014 was the amount of time spent addressing the question of whether autistic people feel pain the same way as “normal” people. After all, if they can with stand repeated 60-volt shocks—sufficient to inflict second-degree burns to their skin—they can hardly have a “human tolerance.”

At the heart of this whole hearing, and indeed the story of the Judge Rotenberg Education Center, there lies a fundamental question: are autistics really human like the “rest of us”? Othering is a necessary component to any system of training or discipline that requires cruel and inhumane punishment. It’s okay to beat that slave, rape that woman, lock away that crazy person, or exterminate that ethnicity—they’re not the same as us. They don’t even have the same feelings that we have. They’re no better than animals; if we could only train them to be like us, we wouldn’t have to apply such tortures.

An ad in the “Ransom Notes” series issued by NYU.

And the problem with the dominant rhetoric surrounding autism right now—promoted relentlessly by groups like Autism $peaks—is that the autistic is silent, incapable of communicating from their self-imposed mental prison. An autistic child is a changeling, a dummy replica of the stolen, beloved, “real” child. This heartless thief leaves grieving families in suspended animation, and it must be combatted like anything that would abduct our children.

An ad by the National Foundation for Autism Research (NFAR).

It stands to reason that anything that might recover a lost child is worth a try. But there’s a fundamental disconnect between the “lost one” and the object on which “therapies” as bizarre and inhumane as bleach enemas, severe emetics, and electrical shocks are applied. The object being treated must stay “other,” or those desperate parents must face the reality that they are physically and mentally torturing their own child.

Except that all of this is a lie. There is no other son, no lost daughter—the children in front of us are real and human. They can communicate, and they can most certainly feel. They will not fare that much better in the world if parents or therapists abuse them until they stop flapping their hands or raising their voices. In fact, they’ll do just as poorly as any physically or mentally abused child. Because that’s what they are when treated with restraints, sensory deprivation, and electrical shocks—victims of torture.

It’s offensive that it took a special hearing in 2014 to decide whether administering shocks to human beings was a legitimate form of “education.” It’s infuriating that the FDA felt the need for more hearings in 2016. And it’s utterly disgusting that in 2018, the patients of the Judge Rotenberg Center are still waiting for the torture to end.

What you can do:

Visit the extensive living archive about the Judge Rotenberg Center, compiled and maintained by Lydia X. Z. Brown.

Take action to urge the FDA to finally enforce the ban they recommended in 2014.

Spread the word using the hashtag #StopTheShock.

Sep 9, 2015 - AV Club, Social Studies    3 Comments

Expanding the Universe

I saw Star Wars for the first time when I was two years old. I perched on a stack of phonebooks in the front seat of our Ford pickup, and the drive-in theater screen enveloped my whole world. I don’t remember what must have been the poor, crackly quality of the sound—the expansive visual feast polished the music and dialogue to match.

I fell instantly, deeply in love.

Nerdy kidStar Wars was all I wanted to talk, or even think, about. As my mom changed my newborn sister’s diapers, I fed her whole scenes of dialogue—memorized on contact from that first viewing—so I could have an acting partner. I roamed over our backyard swing set with tiny fists full of action figures, so many I had to stick some in my mouth to climb the slide ladder. Forgetting to take them out again resulted in the premature decapitation of several first-run figures as I bit down when my feet hit the ground. I had Star Wars bedding, Star Wars towels, Star Wars records, and one sad misfire of a Star Trek pajama set from a well-meaning grandparent.

I played Star Wars with my preschool classmates and neighborhood friends—but only the boys. The other girls weren’t interested, and I quickly learned that inviting them into our lightsaber battles and X-Wing flights earned me their scorn. So many of my gendered ideas about who I preferred to be friends with came directly from this experience. Boys shared my passions, and didn’t expect me to navigate social minefields. We came, we saw, we blew up the Death Star. Simple.

I wouldn’t have a significant group of female friends until I was in college.

And as the only girl, of course, I got to be Princess Leia. As an undiagnosed Asperger’s Syndrome kid, I must grudgingly admit that I was probably more like C3P0—pedantic, oblivious, anxious, always interjecting irrelevant, self-centered observations. But Leia was everything I wanted to be—dashing, brave, imperious, powerful, efficient, and beautiful. Her role let me direct the play scenes in her bossy, self-assured voice, and I used the authority she lent me to muscle my way into even more action, assigning her piloting skills and a lightsaber before the Expanded Universe would.

The only time Star Wars got complicated was when more than one girl wanted to join in. As my sister grew up and I dragooned her into play, the absence of another female role led me to assign her to the only non-gendered main part I could find: R2D2. Artoo was the perfect little-sibling role—non-verbal, swept up in the action, useful as a tool but without the need for much consideration. In our thirties, I would joke about all this at a family dinner, only for my sister to narrow her eyes and growl with long-held bitterness, “I WAS ALWAYS THE DROID.”

I was shocked by that reservoir of resentment, but thinking about it more, what else were the options for two girls in the Star Wars cinematic setting of the 1970s and ‘80s? Women weren’t visible on the command levels of Empire starships; their numbers were infinitesimally better in the Rebel bases. Stormtroopers and aliens were ungenendered to the untrained eye. So what’s left? Those two goth chicks with the water pipe in Mos Eisley Cantina? Mon Mothma or the dancing slave Oola in Return of the Jedi? Sy Snootles?

Shows like Star Wars Rebels, books like Chuck Wendig’s Aftermath, and all the trailers for Episode VII: The Force Awakens represent a hyperspace jump forward in representation for kids of all kinds. Children of color get action heroes to play; so do girls. Even queer kids get heroes that just five years ago would’ve been unimaginable in a mainstream media juggernaut like the new Star Wars universe.

I have no patience for alleged fans who can’t see how this is a good thing. Their pristine fandom was never fair or representative of all the people who loved its stories; we shoehorned our way into the drama through sheer force of childhood creativity.

The simple fact of the matter is this: The future we can imagine grows from the present we live in. As I stood at the bus stop Tuesday for the first day of school, I looked at the crowd of 15 kids, all neighbors and friends of my sons in our apartment complex. It’s as varied as it gets: white, black, Latinx, Somali, Japanese, boys, girls, genderqueer, disabled, neurodiverse. The more of them who see reflections of themselves in visions of the future, the more of them will have the confidence to follow their dreams to create the real future we’ll live into. That world can’t help but be better for the diversity of lives it values.

May 19, 2015 - Ancient History, AV Club    1 Comment

Looking for a Moment of Zen

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Connor around the time we bought our first TiVo box.

We bought our first TiVo machine when Connor was about 7 months old. This turned out to be the single best purchase we made as new parents. It allowed us keep up with our favorite shows so we still felt connected to popular culture through the following months of sleep deprivation and unpredictable schedules.

We developed the habit of watching The Daily Show over Cam’s lunch hour, when he came home from his library job just five minutes up the road. Connor would sit in the cradle of Cam’s crossed legs and watch the show with us. Soon, Connor was laughing along with us, even though he didn’t understand the jokes—he caught on to the rhythm of the comedy, and the funny faces helped too. We didn’t know about his autism yet, but his ability to perceive patterns was already strong.

By the time he was two, Connor had started folding Jon Stewart into the epic adventures he played out with his action figures, as important to the story as his other superheroes. He would even hook a clip-on tie to the collar of his t-shirt, then stand tiptoe on the bathroom stool so he could see his reflection. He babbled in his “moon language,” but with a very peculiar rhythm that ended in maniacal laughter. When I asked him what he was doing in there, he replied with some exasperation, “I Jon Stewart!”

Only a week or two after his second birthday party, he announced very clearly, “For my next birthday, I want Jon Stewart party.” Cam and I found this hilarious, and we assured him that we would make it happen. For our amusement, we checked in with him every few months: “So, what kind of birthday party do you think you might want for your third birthday?” And he steadfastly replied, “I want Jon Stewart Party!”

At last, summer rolled around again, and we worked hard to make his wish a reality. With a birthday so close to July 4th, it was easy for us to get flag party supplies. We handed out invitations with a picture of Jon Stewart on them and the message “WE WANT YOU to celebrate Connor’s third birthday!” to the other kids at his preschool. (We got a few disapproving looks from other parents who thought we let Connor stay up ’til 11pm to watch the show as it aired; a quick explanation of the magic of TiVo resolved things.) The technology where you could get a photo scanned onto a cake’s frosting had just come to town; we got some strange looks at the bakery when we brought in a cast picture, I can tell you.

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The day was everything we could’ve hoped for. His preschool teacher made him a t-shirt with Jon Stewart’s face on it. We played episodes on TV while the other 2- and 3-year-olds ran around whacking each other with American flag thundersticks.2015_05_19_10_21_52

And when it was cake time, he announced with a certain cannibalistic glee , “I eat Jon Stewart face!”

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It’s hard to believe that that party was almost 10 years ago. Connor will turn 13 this summer, a milestone I sometimes wondered if we’d ever reach. His love of comedy is still integral to who he is, and his senses of the absurd and satire come as much from Jon Stewart as they do from us his parents. Whenever we wonder whether he can understand a concept with complicated emotional nuances that can be difficult for autistic kids, we know he’s gotten it when he makes up a joke about it.

To be fair, Connor (bottom left) comes by his weird sense of humor naturally.

To be fair, Connor (bottom left) comes by his weird sense of humor naturally.

It would close a 10-year circle beautifully if we could figure out how to get tickets to one of the remaining tapings of The Daily Show. We had heard that, through friends of friends, one of the birthday party invitations had made its way to Jon Stewart himself. I doubt he still has it, but maybe he remembers it. And if this story makes its way to him in a similar fashion, maybe he could see his way clear to make a kid’s lifelong dream come true.

10 Things My 30s Taught Me

On December 28, I turned 40. This came as no surprise, even to one as math-impaired as me.

It’s virtually impossible to throw a birthday party on my birthday, since everyone is exhausted from Christmas and saving up energy for a big New Year’s Eve blowout (if they’re even in town). There’s even an Old English word for it: symbel-werig. It means “feast-weary,” and that’s what everyone is on my birthday.

The worst it ever got was my 18th birthday. My parents had dinner theater tickets, and my brother was at his friend’s house (after his birthday, the day before mine. No, really.). My sister and I were home alone. She made a Pyrex bowl of raspberry Jell-O and stuck a taper candle in it. We watched Schindler’s List. Whoop-de-doo.

For the big one this year, though, I decided that nothing said “me at 40” like riding rollercoasters. Thanks to Nickelodeon Universe, the indoor theme park in the middle of the Mall of America, it’s actually possible to do this in a Minnesota winter. Also, yay for half-price unlimited ride wristbands from 5-10pm. There was the entertaining possibility that I’d get a mall security escort because I’d been a marshal at the #BlackLivesMatterMOA protest two weeks earlier. I planned to lure him onto rides, in case I felt like chanting anti-oppression slogans on the loop-de-loops. Alas, no joy.

Rolling over the odometer also made me think about what can happen in just one decade of living. I don’t feel older, or even different, just more like the person 30-year-old me hoped to be eventually. Still, I learned a lot of lessons in the last 10 years, so here’s the top 10 lessons I learned in my 30s.

1) Having a second child is nothing like having the first. I had my first son when I was 28, and my second one when I was 32. Instead of throwing up 20 hours a day for 5.5 months, I threw up 24 hours a day for 7.5 months in my second pregnancy. My labor couldn’t have been more different, too. And you needn’t look any further than this blog for how different the boys are from one another. Motherhood: what a weird, wonderful ride.

2) The key to my kid is the key to myself. When I was a kid, my parents and teachers told me I was “socially backward” because I was intellectually advanced. Slamming doors and balloons popping gave me migraines. I preferred the company of adults. And I recognized a lot of these traits in my older son; we joked that he inherited those traits. In fact, what we both were was autistic. Learning that unlocked memories and mysteries that plagued me my whole life, and understanding those helped me translate the world for my kid. We’re all so much better for knowing ourselves.

3) Intersectionality is everything. I’ve felt this way forever, but didn’t know there was a word for it until I read a Flavia Dzodan blog post that introduced me to the term, coined by UCLA prof Kimberlé Crenshaw. I also didn’t realize it was such a controversial idea until I started advocating it. How is this difficult for people to understand? We are all so many different people, and all of our selves are bound together when it comes to liberation. How can you be a feminist who excludes trans women? How can you be anti-racism and simultaneously suppress the contributions of women? How can you demand an end to oppression but hold planning meetings that are inaccessible to disabled people? In Flavia’s words, “My activism will be intersectional or it will be shit.”

4) Don’t move without a safety net. I learned this one the hard way. In Minnesota, you have to be a resident before you can apply for state health insurance. We had paperwork ready to go the day we moved, but we encountered a four-month wait. We’d saved money for an appointment to get me set up with bridge coverage for my fibro and depression. What I didn’t do was research doctors—the one I went to refused to continue the treatment plan I’d had for over a decade. The decompensation that happened without my prescriptions resulted in a summer lost to pain and despair, ultimately landing me in the hospital. Lesson learned? You cannot overplan for your medical care when moving–your life literally depends on it.

5) Family is what you make it. I grew up so close to my family that I refused to even consider moving to New Zealand to be with my Darling Husband, because I couldn’t imagine going so long between visits with my parents and siblings. But after I called out my family about 4 years ago for treating my autistic son like crap and undermining our parenting, everything changed. My brother and sister still won’t talk to me for hurting my mom, even though she and I are fine now. Thankfully, we’ve built a family of friends, old and young, near and far, who more than make up for the love lost. All that’s left to mourn is the continuity.

6) Sharing knowledge is more than the letters after your name. My grad school department kicked me out in 2005 because my area of study didn’t match their idea of subjects that build a “world-class history program.” Despite that, I have 15 years of teaching experience, and knowledge that I use everyday—with my kids, with other kids, with other adults, and in my organizing. Teaching is my vocation, plainly put. Even if the flood of post-recession Ph.D.s makes it unlikely I’ll get a college job again, I’m always looking for ways to share what I know in engaging ways.

7) Caucusing is hazardous to your health. Until we moved to Minnesota, I’d always lived in states with primary elections, so I was extremely excited to attend my first caucus on February 2, 2012. It was weird and idiosyncratic and strangely wonderful; I was too hyped about democracy to sleep until midnight. At about 1:00 AM, I woke with abdominal pain. By 5:00 AM, it was worse than labor, and Darling Husband took me to the ER. I had acute pancreatitis, caused by a gallstone. I spent a week in the hospital, and they surgically removed a bag of rocks from my gut. I now view caucuses as highly suspicious and potentially life-threatening.

8) I am committed with my whole heart and soul to equity. This isn’t about rights, or even history. It’s about empathy. If anyone’s potential is oppressed for who they are, then my potential is also less. I see the beautiful humanity in everyone, and want for them the joys I’ve found and the opportunity to be all of themselves. And yes, I’m willing to block traffic, invade public spaces, and commit civil disobedience to make this happen. I consider it a sacred duty.

9) Together, we win. I’ve never been very competitive, and I always plan for failure so that, as Lloyd Dobbler wisely advised, “…everything’s kind of a pleasant surprise.” But with the campaign for marriage equality, and against Voter ID, and for a new anti-bullying bill and a higher minimum wage, guess what I discovered? I like to win. I like it almost as much as the conversations and organizing it takes to come out victorious. These efforts and the folks I’ve met in them evaporated any cynicism I had about the potential of people power. I highly recommend it to everyone.

10) It’s never too late. I didn’t intend to really go balls-out for the last year of my 30s, but I accidentally did. I learned and performed burlesque dance, even in this imperfect body. I got two big tattoos, the first I’ve ever had. I went to a national convention for community organizers. I shut down highways, corporate offices, and the largest mall in America. I made my kid’s middle school change their negative, reactive response to common autistic behaviors, and re-centered them on positive reinforcement that nourishes all children’s education. All this with my physical and mental limitations. It’s never too late to do important things, and if you forget that, just ask me for a reminder.

Dec 15, 2014 - Physical Ed    No Comments

No One Left Behind

A lot of the social justice work I do is about making spaces–everything from housing to the whole of Minnesota–more welcoming to people whom society often forces out. Sometimes, that’s practical stuff, like urging schools or cities or events to offer gender-neutral bathrooms where trans*/gender non-conforming folks can feel safe. And sometimes, it’s more abstract, like working against police profiling and brutality toward people of color in their own homes and neighborhoods.

The basis of that work is education and empathy. I read, I listen, I ask questions, so when I walk into a new space, I see the ways that place values and welcomes all different kinds of people and their needs. And I also see the ways those spaces exclude and isolate people, which makes a good starting place for effecting change.

So I’ve attended community meetings, planning sessions, trainings, and seminars. I regularly participate in protests, which might include rallies, marches, and sit-, stand-, or die-ins. And the saying in the groups where I organize is that, “If it’s worth doing, it’s worth debriefing,” so I’m learning how to observe what does and doesn’t work well, and share constructive feedback.

But it’s possible for a space that’s been engineered with great intention to include a typically excluded group to unintentionally exclude a different group. Some feminists say they don’t feel safe from patriarchy and misogyny if trans* women are included in the space (I happen to think they’re wrong, for the record). Often, queer people of color feel uncomfortable in the largely white LGBTQ activist movement. Class barriers manifest often in community meetings, where those with more income and education assert themselves as more worth listening to than their less privileged neighbors. We all need to do better, even if we think we’re doing the right thing just by showing up.

As I see intersectionality championed in the powerful, new spaces we’re constructing, though, we’re missing the mark on disability. I’m physically and neurologically disabled, thanks to the Wonder Twins, fibromyalgia and autism. I’m not the most restricted person at a gathering, but I do face barriers that others don’t. I’m also used to being in the company of someone with more intense disabilities, though, so I’m attuned to obstacles so I can help them negotiate our environment.

And the new movements need to do more. I’ve had to choose which breakout session to attend based on which didn’t require me to climb a flight of stairs. I’ve had to leave valuable trainings early because the bright lights and unchecked noise level wore me out. I’ve also sat through meetings which taught me nothing because I couldn’t hear or see the speakers. And I’ve both hurt myself trying to keep up, or just fallen out completely, with marches that followed a route and went at a pace that left all but the able-bodied behind.

And I’m full-sighted. I’m not in a chair. My lungs and heart are strong. I have 40 years of coping skills to manage sensory input. I hear exceptionally well. If I can’t keep up, who else is bejng left behind? And what knowledge and wisdom are we losing when they’re abandoned?

I have a lot of thoughts about accommodations and modifications to make the spaces where real, radical, revolutionary change is happening accessible to all disabled people. I’ll probably break them into separate posts.

But I’m asking each of you who reads this to spend a bit of time thinking and examining your surroundings with renewed curiosity. Think of the physical gestures that literally embody the movement: raised fist, raised hands, bodies marching and lying down. Imagine that you can’t make those gestures in solidarity. Think of the speaker whose voice and insights you most want to hear in the world. Imagine the flight of stairs that keeps you from getting to see them. Imagine seeing that person but not knowing what they’re saying.

How welcome would you feel? How valued? How powerful?

If the answer is “not very,” well, the revolution’s got to change.

Apr 2, 2014 - Uncategorized    3 Comments

The Abusive Cult of Autism Speaks

A brief note: I’m not someone who believes religion is inherently evil and damaging. However, it’s inarguable that religious institutions and self-serving people in them have done evil, damaging things to individuals, communities, and nations in the name of their religions throughout much of human history. If you don’t agree that there’s a difference between religions as philosophies, and the human-run institutions that gather temporal power in their names, you’re probably not going to get much out of this post.

I understand why people flock to Autism Speaks. Really, I do. Yes, as an autistic person and mother to one, I am furious, shocked, outraged, and exhausted by the hate speech this group produces, while still monopolizing the loyalty of millions of people and the attention of the media. But when people ask me how anyone who knows someone autistic could possibly support this organization, I’m forced to admit that it makes perfect sense. Religious institutions have been abusing the faithful for centuries with many of the same tactics.

It starts with a crisis. Autism is not a disease, nor is it a death sentence, but the current public opinion tells parents whose child is diagnosed with autism that they should be devastated. Give up the dreams you have for your child, they’re told. They will never give you those perfect moments that every parent imagines for nine months or longer. They won’t go to kindergarten, or play sports, or go to college, or marry. You may never hear them say “I love you.”* You didn’t get the child you expected; you’re the victim of a cruel bait-and-switch. Autism Speaks validates this fear and betrayal; autism is a thief that abducts children and leaves dolls and monsters in their place.

In the face of this decree, parents look for absolution. They confess to a parade of doctors that they ate linguine with white wine sauce or took an antidepressant during pregnancy, or broke down and asked for pain relief during labor, or followed the recommended vaccination schedule during the first years of their child’s life. Autism Speaks tells parents that they don’t deserve guilt or blame for their child’s condition; autism is cruel and whimsical like a natural disaster.

The only acceptable response to denial and despair is to follow the proscribed path to salvation, and parents are promised that, if they do enough, they can pull their child back from the brink of hopelessness and save their families. Given the choice, what could possibly be too radical a course? To save a child, is there ever too much money, too many doctors, too many hours of therapy? The community of the suffering lifts up parents who pursue the most extreme efforts of self-sacrifice and dedication, and the stories of these saints are shared like talismans of paradise. Autism Speaks leverages the language of battle; autism is an enemy that can only be defeated by militant means.

And someday, the war will be over. Someday, parents’ sacrifice will be unnecessary, but only if we raise more money, hand out more blue lightbulbs, and find a “cure”. A cure would bring back the changelings, the lost children we misplaced through our carelessness. Of course, there’s one thing that’s even better than a cure: a test. If we had a test, surely no compassionate person would inflict this pain on innocent children and those who love them.** Autism Speaks offers hope of redemption and salvation; autism can be escaped and wiped out.

Except that none of this is true. The lie is that autism is a disease, or a thief, or a disaster, or a war, or a thing that can or should be exterminated. If you believe any of those, then you must accept that you believe the same thing of autistic people themselves.

And if you can’t believe that anyone is a disaster or a war or a thing that should be exterminated, then you must reject Autism Speaks. Their rhetoric makes precisely these claims about autism, and they use up the public’s attention span on the subject of autism to raise money that almost never actually helps a single autistic person or their family with what they need right now.

The most important thing about abusive religious institutions AND Autism Speaks is that they cannot tolerate sunlight, and they cannot function without a silent object of devotion. When autistic people’s voices are heard, the lies and hate speech wither in the full force of the logic, empathy, power, and beauty of their real lived experiences.

Because autistic people and their families are fully alive, no matter what Autism Speaks says. And life is messy, chaotic, expensive, and exhausting. It’s also hilarious, and meaningful, and transcendent.

Whether or not you believe there’s something that comes after this life as we’re living it, surely it can’t be won by silencing and abusing others on the way.

 

* – It hasn’t been that long since the same things were said to parents of LGBT or Down’s Syndrome children. In some places, they still are.

** – This is not a new concept. Most people know it under another name: eugenics.

Mar 25, 2014 - Physical Ed    No Comments

This Dissenting Body

Every body I inhabit is a dissenting body.

Anxiety, anger, and disorientation emanate from my autistic sensory body. I can’t stop listening to other people’s noise through the walls, and each heavy footfall above me bruises my eardrums. A puff of my husband’s breath on my face is enough to wake me from a sound sleep. I adjust the blinds, the lights, the brightness of my screen in constant rotation. I seek refuge under the comforting weight of white noise and thick blankets, even when my heart longs for other people and open air.

My physical body protests in a language of chronic pain and sleeplessness. These disruptions occur arbitrarily; actions which give me joy now may trigger furious flares an hour, a day, a week later. And if physical penalties for disobeying my body’s limitations weren’t enough, it also inflicts its dissent on my psychological self by failing to administer the correct neurological chemicals to avoid the fogged-in abyss of depression. Sadness begets sleeplessness begets pain begets sadness, and so forth.

I often find my body unacceptable, and so does society. Every narrow seat, every cutting waistband, every judgmental voice tells me I don’t fit expectations. I brush, I tweeze, I shave, I wax, I drape, I shift, I cut, I hide. My shape is segregated into shrinking fabrics and diminishing retail spaces. It is targeted with advertisements and poisons. On the days when my body prevents me from doing meaningful work or feeling lovable, I am crushed under relentless waves of warfare.

And even if my body could fit into the definitions of worth, its very identity—as a woman, as a bisexual, as a disabled person—is constantly erased for others’ convenience. The conditions of my existence are subject to legitimized dismissal by the medical establishment, the justice system, the corporate structure that wants to suppress and exterminate that which cannot turn a profit. Reproductive control and healthcare are privileges I can check out with my skin color, only to be recalled by my economic status. If I wear my gender too openly, I’m asking for sexual assault. If I conceal my gender too well, I risk violent words and acts by those threatened by challenges to an artificial binary.

So because all my bodies are cause for dissent, I use my body as an instrument of dissent. I’m learning to seek pleasure, and to wear my rolls and creases, flagrantly and without apology. I’m walking into the halls of power to demand care for my body and others like it, through access to healthcare, economic security, an end to rape culture, and equal rights for LGBT and disabled people. I’m raising my voice in rhetorical flourishes and strident shouts to demand an end to systems of racist, sexist, and classist oppression, fueled by corporate and military powers seeking to buy or win what I am entitled to as a citizen and human being.

As long as I have a dissenting body to my name, I will use it to obstruct that which oppresses it.

Meltdown in the frozen north

Our rental managers at Como Park Apartments stepped up to offer day-long activities for the apartment complex’s kids when school closed this week. This came as very welcome news, as our car remained resolutely opposed to starting in the sub-zero temperatures. Big-hearted community efforts like this keep us here when, to be honest, we could use a little more room—there just isn’t anywhere else with neighbors and management who give each other such close-knit support.

Monday was grand, and the DH and I got loads of work done while the boys played the day away at the party room. They came back with tales of new friends and pizza-sauce stains on their faces. Tuesday seemed to be headed the same way, but at 2, my cell phone rang. “I need you to come down,” our neighbor said. “Connor’s having a meltdown.”

When we got there, he was sitting in a corner with two of the staff who were talking calmly despite his sobbing. I helped him up and hugged him tight, despite his wet swim clothes, then convinced him to come sit with me so we could talk more easily. I held him until his breathing and tears slowed, then we started to dissect the series of events that left him so upset. A scare from some horseplay in the pool, combined with embarrassment over his friends seeing him cry, kicked it off. But it was the clever liar of depression that told him everyone hated him, that he was a waste of space, and he should just die.

While it was good that the DH and I were home so we could reach him quickly, the neighbors and staff had done everything exactly right. That’s far from guaranteed when it comes to folks who don’t deal with autistic or mentally ill kids every day, and I wanted to take a moment to write about what they did and how it might have made the difference between a bumpy patch and a potential disaster.

First, the adults recognized that he was starting to meltdown. In my experience, this looks different from a regular episode of angry or sad crying; instead of falling apart, getting limp, or long wailing, a kid in meltdown usually winds tighter, with shallower breathing and critical self-talk in an escalating pattern. They may lash out at people who try to get close, or even throw things, but they’re generally not interested in hurting anyone but themselves. The best case scenario is to derail the meltdown, and distraction is the best way to do it. Give the kid something to play with, like a fidget or craft—one friend kept knitting in her bag when she worked with a child who found the motion soothing. Strike up a conversation on a common interest, ask questions. If they’ll accept a hug or something heavy for some comforting pressure, that helps too, but it’s rarely the right move to force physical contact.

If you can’t de-escalate, safety is critical. Thoughts that hurt as much as the ones that bubble up in meltdown make a person want to flee, and they may bolt for the door, or try to hurt themselves, or both. Connor had been in the swimming pool, and tried to drown himself when his self-loathing got so heavy so fast. Once they had him out of the water, he wound his scarf around his neck; they got it away from him. He ran to the far end of the balcony, and they sat with him. Location, tools, and support—they had the bases covered.

Third, they stayed calm. Kids in meltdown are loud, and sometimes they’re saying things you don’t want to hear: dark things, angry things, scary things. The temptation to talk over them, to force reason atop their disorder until both of you are screaming, is powerful. But it doesn’t help. Even your silent presence, steady and resolute if non-communicative, is better than pushing them toward a brink they might not otherwise approach. Mostly, they just need to spill. Don’t silence, don’t argue—the storm will blow itself out if it’s not being fed.

We’re grateful for many things on the good days, but sometimes a bad day turns up a cause for thanks too. I can’t say enough good things about the compassion and quick-thinking our neighbors showed in a situation that’s hard to manage even with years of experience. The same factors, managed with indifference or inattention, could have yielded tragedy I can’t bear to think about. Every parent knows that sending a kid out into the world on their own is to live with your heart beating outside your own chest. Having the right understanding of a meltdown situation can equip you to handle other people’s hearts and children with care.

Hey, I blogged a thing somewhere else!

In light of the recent outrages from the shameless assplugs over at Autism $peaks (yes, I’m unhappy, why do you ask?), my friend Elsa asked if I’d do a piece for her bang-up awesome disability blog Feminist Sonar. You can find it here.

The biggest surprise for me was that my brain decided to go the cold, academic dismemberment of a faulty argument route, as opposed to the table-flipping screed I’d been expecting. In any case, I hope you find it illuminating.

Sep 20, 2013 - Uncategorized    1 Comment

What I Can Do For You

I didn’t set out to be a Woman of Mystery. Really, I didn’t–I’ve always thought the whole thing with secret identities was super-hokey.

But it appears that some folks don’t actually know what all I can do. That probably has a lot to do with having a number of different jobs, some of them concurrently. So I thought that maybe I’d write a post that just stands as a more chatty sort of CV, for future reference. I know I’ll be back in here to fiddle with the things I’ve left out, but this is basically me.

EDUCATION

I have 15 years’ teaching experience. Most of that is at the university level, but I substitute taught for middle and high schools for 3 years, where I was a special favorite of the foreign language teachers. I also have experience teaching short-term history and foreign language courses for homeschool collectives where kids to get instruction on subjects a little more technical or diverse than most parents can provide.

I’ve written whole courses, including websites and primary source collections, for Western Civ, Intro to World Religions, Women in Religion, Early and Medieval Christianity, and Rhetoric and Composition. I lecture, I organize group activities, I lead discussion groups, I write and grade exams, and I give one hell of a test prep session. And I am exactly the person you want to bring along on a trip to a museum or an historical site. (I may not be the person you want to go see a movie about medieval times with, though.)

I can train folks on skills commonly used in (but not exclusively by) community organizing. I’m a good consultant on issues of diversity, especially women’s and LGBT issues and neurodiversity, because I can effectively articulate the reasons why things do or don’t work.

EDITING/PUBLISHING

I offer professional services in copyediting and proofreading, as well as art direction. I edit for content, consistent style and voice, continuity, and flow. I can also check formatting in academic work using MLA or Chicago style. I’m good at highlighting problematic topics and language that might not be accessible or welcoming to every reader. And I’m like the kid from The Sixth Sense when it comes to proofreading: “I see typos. Everywhere.

I have had paid gigs editing and/or proofreading academic papers, roleplaying games, board game instructions, marketing material, self-help books, and SF/F novels. I’m eager to branch out into editing more genres of fiction (I would rule the world at romance novel editing), and I’m looking forward to my first paid job translating a major work from French to English soon.

I adore doing art direction, especially for RPGs, because I get very clear images in my head from the text, and I’m good at describing them for artists to interpret. I include copious photo references (all digital links these days) for people, places, correct period costumes, weaponry, and other relevant details.

CREATIVE

I crochet, knit, cross-stitch, sew, and make jewelry, as well as a number of more or less useful one-off crafts. I brew herbal medicines in my kitchen, including “magic stuff” which may be the most useful substance ever invented. I perform tarot card readings (yes, it seems to work equally well over Skype, email, or Twitter). I blog, and I write short- and long-form fiction–I would dearly love to participate in an anthology. I can design meaningful multi-faith (or no-faith) rituals for any occasion, like weddings, memorials, or baby blessings. I’m good at public speaking, and have performed speeches, sermons, and MC duties. I’m designing my first card game; I’m also writing a roleplaying adventure that teaches social skills to kids on the autism spectrum.

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