Dangerous Assumptions

Autism, Books, Neurodiversity, Parenting

Trigger Warning: This post will discuss ableism, abuse and filicide of disabled children and adults, dehumanizing language about autistic people, and harmful behavioral therapy. I’m placing a trigger warning here as a matter of courtesy to readers who have forms of PTSD that could be triggered by these topics.

I recently read a book called Ghost Boy by Martin Pistorious. This remarkably compassionate and sensitive memoir relays the story of how Pistorious fell ill with a virus at age 12, went into a kind of waking coma for a few years, and reemerged into consciousness in his mid-teens. When he awoke from that blackout state he had very little control over his body, so that he was unable to signal to anyone in any way that he was again aware, listening, and wanting to communicate.

Eventually an attentive caretaker noticed that he seemed to want to communicate and she advocated for him to be evaluated as a potential AAC (Augmentative and Alternative Communication) user. He was able to use eye gaze to prove that he could communicate, and eventually, with hard work and great passion, learned to use a few different AAC tools, including of course typing out his memoir of these experiences.

Meanwhile, I’ve also been reading Typed Words Loud Voices, a book of essays edited by Amy Sequenzia and Elizabeth J. Grace. It’s a slim volume out of Autonomous Press but I’ve been savoring it slowly. These essays (and a few poems) are all written by people who type to communicate; some are autistic, some are not, some are functionally non-speaking, some are partially non-speaking, and some speak most of the time but communicate better through typing than through talking. A common thread through these works is the experience of typed communication as freedom for the authors – freedom from the pain of being misunderstood.

A book review came out in The New Yorker last week that has set my mind on fire. In “Seeing the Spectrum,” Steven Shapin reviews the new book In A Different KeyThe Story of Autism, but he has a few choice editorial comments to make about autistic people himself. I’ll leave my thoughts on the book for another time as my copy is currently in the mail and I plan to read and review it fully.

One of Shapin’s remarks goes thusly: “It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

His choice of words here strikes me as notably harsh and hateful, but the truth is, the sentiment beneath them is far from original. The idea that having a child who does not speak or like certain kinds of touch is soulless and tragic is, unfortunately, not only not new – it’s terribly commonplace. Shapin, like everyone else who parrots this narrative, leaves aside the question of why such a child might self-harm, but let’s not.

A common straw man argument that people use against autistic adults who argue for acceptance is that we are not like those so-called low functioning children and therefore cannot speak for them or even about them with any credibility. This argument assumes quite a lot: it assumes, for one thing, that none of us are parents to autistic children. It assumes that none of us were once non-speaking children who were thought to be “low functioning.” It assumes that functioning is a set of two static, binary categories. And it assumes – and this is so important to point out – that none of the autistic activists fighting for acceptance and equality online, in articles, in blog posts, and on Twitter, is actually non-speaking themselves.

Shapin makes the absurd distinction that “the capacity for independent living is an important factor in whether an individual is held to be ‘high functioning’ or ‘low functioning’.” I’ve also heard it said that the ability to hold a job is what qualifies an autistic person as high functioning. Of course, the ability to live on one’s own and hold a job are things that are only pathologized for disabled people, right? Lots of non-disabled people struggle with those things without being called low functioning.

If you stop to think for even a few seconds about what these labels mean, I think – I hope – you will see how little sense they make. Which label do you slap on a person who does not speak, needs significant daily live-in care, but can write a book? Which label do you slap on a person who speaks fluently, and lives alone, but relies on disability payments for income? I hope that it is obvious how arbitrary it is to qualify a human being’s “functionality” if you really consider it for a moment or two.

Of course, people like Shapin bolster their arguments by dismissing out of hand those who require assistance to use AAC – sometimes called “supported typing” or “facilitated communication” (FC). (The link in previous sentence goes to an awesome post on Unstrange Mind that includes videos of FC users in action.) FC was supposedly “debunked” in the 90s, but that research is now known to have been bad science, and there are many wonderful FC success stories, including that of Amy Sequenzia (co-editor of Typed Words mentioned above) and poet Tito Mukhopadhyay (one of the autistics featured in Spectrum: The Film). By dismissing both the autistics who speak and those who don’t but use assisted typing to communicate, the people who want to discredit the neurodiversity movement get us both coming and going.

Where am I going with this and how does it all relate? I want to return to Shapin’s statement about the searing experience, if you can bear to reread it: “It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

By dismissing the voices of those who type to communicate, by erasing the souls of children who do not talk, Shapin and others who perpetuate this kind of narrative dehumanize autistic people. Dr. Ivar Lovaas, the founder of ABA therapy whom Shapin extols in his piece, once said of autistic children, “You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense.” I hope that if you ponder it for even a moment, that quote runs a chill down your spine.

This dehumanization and dismissal of autistics as not-people, as not really there, as soulless, as without thought, is precisely the kind of story – the kind of lie – that leads to abuse and murder of autistic children and adults. We don’t have to speculate that such awful things could happen; they do happen, with disturbing regularity. What sorts of things would people, in their carelessness, callousness, and sometimes cruelty, do to a person whom they think is not really, in any practical sense, there?

Martin Pistorious tells us in Ghost Boy of the awful things that were done to him when he was unable to communicate. He was treated like a thing, like an annoyance, treated worse than an animal, when people viewed him as not-a-person simply because he could not speak.

Aaron Greenwood tells us in Typed Words, “i was never ok with being treated like i needed to change. it is a horrible reality only to have people in power treat you like an object only without asking you or respecting you.”

It’s inexcusable, inhumane, and utterly irrational to persist in the belief that people who don’t speak do not think, when over and over and over again – given access to some usable communication tool – they tell us that they do.

There’s a concept from Disability history called “the least dangerous assumption.” As applied to people with communication differences, including non-speaking autistics, it means that in a very real way, the least dangerous assumption parents, teachers, caregivers, and the public can make about a person who currently is not able to verbally communicate is that they have complex thoughts and feelings just like any other person, but are not yet able to express them.

What harm, after all, could be done by treating this person with respect and assuming that they do understand you, they do feel a wide range of emotions, they do have thoughts and opinions, and that the ways they do communicate – be it laughter, echolalia, screams, or even self-injury – are meaningful? At worst, they never do find a method of expressing their complex thoughts, but have been treated like a human being.

The most dangerous assumption, meanwhile, is that they don’t understand. Their eyes are not windows to any sort of soul. They are people in form but not in substance. Their communications are disregarded as meaningless or rudimentary. Imagine if, all along, a person treated this way understood absolutely everything they were told, understood that people underestimated not only their cognitive abilities but their very humanity, understood that they were seen as less than, damaged, or not even there. Imagine the danger to a soul viewed as soulless.

Imagine how you would feel in that person’s place. Would you feel angry? Would you want to scream? Would you lash out sometimes? Can you imagine something like an inner struggle to express rage without hurting other people that might lead you to self-harm?

The desire to be seen is perhaps the strongest craving in a human being. To simply be seen or heard by another person is the most basic level of communication; and I don’t mean seen literally with the eyes, or heard with the ears, but to be beheld by a fellow human by any means available. To know that you have managed to convey something of your unique self to another person both roots you to the world and frees you. Martin Pistorious did this with only the smallest movement of his eyes at first – and a person who was willing to see him. Aaron Greenwood (again from Typed Words) wrote of his “life’s longing to be part of this world.”

Everyone wants this: a place in the world. And everyone can have it, if we truly listen. 

Image is a photo of the Earth in space, as a background to the text in capital white letters: “Everyone can have this: a place in the wold. And everyone can have it, if we truly listen. eisforerin.com”

What I Learned From A Week Without Media

Identity

My media brownout is over – one day short, but I’m done. If you missed it the first time or want the full refresher on what the terms of my brownout were, the original post is here. In a nutshell, I avoided watching TV or reading anything – that included books, magazines, blogs, articles, anything – and I kept my Facebook and Twitter use to a bare minimum. I tweeted but did not read my timeline. I updated my Facebook Pages and checked my notifications just to make sure I wasn’t ignoring anyone who needed me but I avoided responding to anything non-essential and did not read my newsfeed.

The purpose of all of this was to stop consuming other people’s words and ideas and focus on producing my own. Perhaps to turn my attention to some things I’ve been wanting to do but haven’t gotten around to.

What I Liked

There were some things I liked about the brownout. I did notice that I felt less distracted, less forgetful, less disorganized, and even in some ways less anxious and depressed – at least for the first few days. I organized the pantry, scrubbed the shower, baked bread, cleaned out some jpegs off the old digital camera.

I played with the kids more, and they definitely liked that – though I think I also snapped at them more because I didn’t get many restorative breaks from playing. I noticed that THEY spent a little less of their time on screen time, which made me realize how subtly my habits affect them, even though I always thought I was just sneaking away to Facebook when they were otherwise occupied.

I did some more writing and drawing than I usually do, though that was partly out of sheer boredom and lack of anything else to do. I got around to some little creative projects I’d wanted to do, like 4 minute daily diaries inspired by Lynda Barry’s Syllabus: Notes from an Accidental Professor.

What I Disliked

On the other hand, there was a lot about this experiment that I disliked. I felt like I was working all the time, because when I wasn’t taking care of other people or the house or my chores, I was writing and drawing. And even though I like writing and drawing, it feels like work. Work that I enjoy, but still work. None of the usual “treats” that I give myself for a hard day’s work were available, I was bored a lot, I ate more, and eventually the daily stress with no outlets really wore on me.

It felt wrong to be totally disengaged from the rest of the world. It seemed selfish and ridiculous to just shout my thoughts into the void without engaging in conversations online. I missed out on things that were actually important even if they were “just” on Facebook – sometimes when stopping in to check notifications I would see a friend having a problem and feel so guilty for not answering their call for support. If I hadn’t cheated I would have missed a pregnancy announcement, a marriage engagement, my brother’s girlfriend’s birthday, and who knows what else!

The thing about social media is it’s called social for a reason. I hated turning my back on it completely. My friends on Facebook and in the blogs I read are not just noise, they’re real people that I care about.

Jonesing

The Hardest Part

I think the hardest part of the day for me was the very end of the day when the kids were asleep and I sat down to relax with Mike. There was no pot of gold waiting for me at 10pm – just more writing, or bed. I did try going to bed earlier, but that didn’t mean I slept better.

Not reading at all was just sad and depressing. I missed my books. Friends would talk about books, Instagram pictures of books, even LEND me books, and I felt like an alcoholic trying to drink a soda water at the bar. It was just terrible. If I am addicted to reading, that’s an addiction I can live with. If anything, taking a break from reading made me appreciate reading even more. A life without words is no life for me.

What did I learn?

I did not feel like the brownout enhanced my creativity directly. Already by the end of the third day I felt like my well was running dry. To me, taking in other people’s ideas is part of the creative process. Other people’s writing stirs up memories and ideas; without them, I stagnated. The brownout did, however, free up time for me to write and draw more, and I think that having a more organized space indirectly made me feel more creative.

I noticed, by not being on my phone for all the little boring waiting-around moments of the day, how much everyone else is on their phones. I felt a little smug and annoyed but also very aware that I was partly just jealous and would be doing the same if I could – like being a pregnant lady or designed driver at a drunken party. I think a lot of people fantasize about disconnecting from the internet, but it hit me that in 2015 that means disconnecting from the world we live in, and that’s pretty unavoidable.

I learned that being on Facebook for much of the day definitely has negative effects for me. It makes me more distracted and spacey, I get less done, I have less energy, and I think that being connected to other people’s problems for too many hours a day made me feel depressed. I liked how it felt to be off Facebook all day – but I didn’t like NEVER being there. So I think I will just go on Facebook at night from now on.

My New Plan

In a general sense, I found a media rhythm to my days that felt natural. When my options were severely limited, I could think more clearly about how I really wanted to spend my time. Here’s what I came up with:

In the morning I think it’s good to be available as much as I can. Of course I check email every morning just in case there is something time sensitive and/or work related. I have breakfast with the kids, play with them, and write when they don’t need me, since I tend to have the most creative energy before noon. I putter around the house a bit, do some chores and some little projects if I have any. We go out if we have somewhere to go or something to do.

In late afternoon when the kids are usually vegging out by themselves, I need downtime. I’ll stay off Facebook still, but it would be a good time to read blogs and books.

I figure after 6pm going on social media is fine. Sometimes I like to write, or read blogs, or if I’m just beat I can look at Facebook.

There always comes a point just before bedtime when I am done with everything and the only thing I want to do, until the kids are ready to actually get in bed, is read a book. And that is what I will do, just as I always used to. This time sucked during my brownout – I usually just sat and stared into space, not thinking about anything.

After the kids are in bed, it’s my time with Mike. That can include TV time, since I did not feel like we had an awesome time without it! We are usually too tired to have scintillating conversations at 10pm, and you can’t do that other thing every single night (well, we can’t). It’s fun to enjoy TV together.

My time after that, if I’m not quite ready to sleep, is mine. Facebook, reading, TV, mine mine mine. I don’t feel bad about that one bit. Going to bed listening to white noise was sad and dreary. I didn’t sleep better and I hated it!

Youwantme

Would I recommend a brownout?

Do I think you should try this? Yes, with caveats. I definitely did not think I needed a FULL week to get what I needed to get out of the experiment. I started writing this wrap-up post on Day 4 and finished it on Day 5. On Day 6 I was really starting to reach my limits, and cheating more and more. I cheated to watch the Superbowl with Mike, which was fun, and after that it was over for me.

I don’t think that I got much out of not reading books. I guess it probably would have been less effective if I had simply filled up my day with MORE reading than I normally do, and continued to exist in a state of semi-distraction all day and night long. So if you can avoid doing that, I see no need to stop reading. It did not give me more creative ideas or energy and if anything did the opposite.

I think it’s worthwhile to give up Facebook and Twitter entirely for a short period of time, maybe a few days. It gives you a better sense of how much time you do want to spend on them, which almost certainly won’t be NEVER, but probably not as much as you were before.

As for TV, meh… that depends on your TV habits. If you feel you watch too much, try giving it up for a few days. I didn’t think I watched too much before and I still don’t.

If you do try this, please holler at me in some way – on Facebook or Twitter or in comments here – to let me know how it goes! I would love to hear about what you got out of your media brownout.

Media Brownout?

Books, Identity

I’m reading a classic book about unlocking your creativity – it’s called The Artist’s Way by Julia Cameron. The format is a 12 week long course with some reading from the book and a number of exercises that are supposed to help you “unblock” your artistic ability. Since starting the course, I have been writing three longhand pages of free writing each morning, taking myself on one “artist date” a week (if I can manage it) (the “date” just means going out ALONE and treating myself to a nice time), and doing many of the thinking/writing exercises.

For week four, Julia has asked me to take a break from consuming media. Her book predates the Internet, so she doesn’t mention it, but I think it’s safe to say she would include that in her prescription, in addition to taking a week off from watching TV, and also…

Reading.

She knows that the break from reading is shocking. She claims that blocked artists tend to be addicted to reading because it helps them stuff down their own creativity. I don’t know about that. If that’s true, I’ve been a blocked artist since I learned to read. I LOVE reading. I love books. Reading is like breathing to me. I MIGHT DIE.

Also, I’m kind of resentful slash dubious about the idea of a media break for myself, because without Internet, TV, or books, what kind of downtime am I going to get? That’s pretty much all I’ve got going on as far as relaxation and me time. Julia thinks that if we aren’t reading and watching the tubes we’re finally going to get to all those hobbies we’ve been meaning to try. Uhhhh, look, Julia. I am not running out to taking surfing lessons any time soon.

I’m a little unsure about the whole Artist’s Way endeavor, really, because I’m not so convinced that I AM a blocked artist. I feel pretty in touch with my creativity. What is preventing me from creating more than I do is a little thing called parenting. And I’m not about to give that up.

Still, I’m trying out the course, albeit slightly tailored to the demands of my current lifestyle. I have to admit that I have noticed an eerie synchronicity between some of the stages she talks about and things that are actually happening to me. The emotional phases, the vivid dreams, etc.

media

My weeks for the course run from Tuesday to Tuesday, so I started yesterday. Here are the terms of my brownout, tentatively so far. I put a question mark in my post title because I am not at all certain I’m going to stick with this for a week. Also, sad but true: if I can’t read OR watch TV on my phone, I really have no idea how I’m going to fall asleep. I haven’t done that probably since I was a toddler.

Facebook. I’m off my personal Facebook feed for the week. I can still get messages to my Messenger app, and I have the Pages app to monitor the Pages for my blogs and other projects (uhhh I have a few!). I’m permitting myself to scan my notifications just to make sure I am not tagged in anything urgent – but no responding unless it’s truly urgent!

Twitter. I’m tweeting here and there and responding to tweets (again, I count this as necessary blogger presence). I’m not reading my feed. I don’t look at Twitter all that much anyway so it’s no big sacrifice.

Blogs. I am writing blog posts (obviously), since I think that can be counted as creative work! I am going to take the week off reading blogs. I feel a little guilty about it, seems selfish of me to ask people to read mine when I’m not reading theirs, but I’ll catch up at week’s end.

Instagram. I haven’t been using Instagram that much and I don’t spend much time on it when I do, so I’m keeping it on my okay list. If only to record the events of the week.

Pinterest. I use Pinterest so seldom that I almost forgot to put it in the list. Meh.

TV. I am giving myself a husband loophole here. We usually watch ONE show together after the kids are asleep. I know there are other things we could do, but we are usually pretty fried by 10 pm. If we don’t watch any shows all week, what’s going to happen is he is going to surf social media while I stare at the walls, or… take up knitting in silence? Maybe I could sit and write. Hm. That might work.

Music. Julia does not forbid music, which gets the side eye from me, because what if I were a blocked musician? I’m not, though, so music stays.

Books. I… guess I will try this. I’m not happy about it. I might quit. I’m mostly just curious to see if I can do it and if I will magically start writing a novel if I don’t have any stories coming in to my brain for a week. It might even be good timing since I am not currently reading any library books, BUT I just had a hold come in on a book I’ve been waiting for for months. I might be able to read it in a week after my brownout is over. I won’t give up reading to the kids.

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