We Are Violent People

Disability, Neurodiversity

TW: violence, murder, homophobia, transphobia, racism

No one is exempt, no one is free from this culture, because we are in it. It's the air we breathe.

Image has the text, “No one is exempt, no one is free from this culture, because we are in it. It’s the air we breathe. eisforerin.com” with a background photo of a dark cloudy sky.

There are so many moments when I wonder what the point of all of this is. There are times when the words pour out of me and times when I reach down inside and pull them up painstakingly, and sometimes there is wordlessness.

Yesterday I saw the news about Pulse Orlando in the morning on Facebook. I worked on a profile picture for Autism Women’s Network to honor the LGBTQ community on social media, and then I powered down inside. Late in the day I finally went through my Facebook feed to offer Likes and Loves to friends who are hurting.

I’m a bit baffled by all the calls for gun control today. I’m all for gun control – if I were Queen of America I would throw every single gun in the country into the ocean without batting an eyelash – but does anyone actually think that the mass murder at Pulse is going to change gun policy? Let’s get real. We didn’t care when 20 mostly white kindergarteners were killed in suburban Connecticut, does anyone seriously believe we’ll care more about 50 mostly non-white queer adults in a nightclub in Orlando?

You read that right, we didn’t care.

There’s always a convenient scapegoat to absolve us of our guilt. If the killer is white, it’s mental illness, and if the killer is brown, it’s terrorism. Sometimes we luck out and get both excuses, and sometimes we get a one-off scapegoat like video games or talk radio. Then we all agree that the rest of us are just fine and we move on to the next story and the next shooting, lather, rinse, repeat.

Why do we do this? We do it because we are all complicit, and we want nothing more than to make that nagging feeling of guilt go away as quickly as possible. Any time you see a group of people looking to pass the buck, you see a group of people committed to preserving the status quo.

Cain asked God with a shrug, “Am I my brother’s keeper?” while he had blood on his hands.

It’s appealing and easy for liberals to blame conservatives for issues of discrimination and hate, but as long as we keep doing that, nothing is going to change. No one is exempt, no one is free from this culture, because we are in it. It’s the air we breathe.

And America is a violent culture. I don’t like guns, but I think guns are just the roof tiles on top of this house we’ve built of hate, fear, xenophobia, racism, homophobia, misogyny, ableism, classism, materialism, and elitism. We are merciless, stingy with our compassion, relentlessly driving marginalized people to assimilate or die. We are violent people. Even at our best we are often at our worst: using disabled or homeless or poor people as props to boost our egos as we dole out charity.

Our version of “acceptance” these days mostly consists of putting pressure on the Other to conform to the dominant culture: gay people, we grant you access to our patriarchal marriage system; autistic people, we grant you access to our therapies designed to make you act more like us; disabled people, we grant you access to technologies that will fix you; brown people, we grant you access to educational systems where you must prove your worth to us; immigrants, we grant you entry to the ranks of our working poor. Transgender people, we invite you in to (bizarrely enough) help reinforce our gender conformist and soul crushing beauty standards.

 

It is the drumbeat of America: Assimilate or die.

We believe that if disabled people can’t be cured, they’re better off dead. We believe that people who aren’t white should be invisible. We believe that gay and transgender people are fine as long as they look and act exactly like straight people. We believe that men have a right to do what they wish with women’s bodies. We believe people have to prove they are worthy of the most basic level of human dignity and respect. We believe that if you don’t have shelter, clothing, and enough to eat, you aren’t trying hard enough.

This isn’t the land of the free, it’s the law of the jungle. Kill or be killed.

One disastrous side effect of American Individualism is that we refuse to acknowledge the power, or even the existence, of systems; but systems don’t go away when you aren’t looking at them. You think you’ve done your part by not being racist or homophobic or ableist – you haven’t. Even if every person in America could magically be not-racist tomorrow (and that would be some magic trick), we would all still be living in a racist nation. Racism is a poisonous thread woven through every facet of American life, from housing to education to city planning to entertainment to law enforcement to the justice system and on and on. And this is true of all the systems that oppress marginalized people and grant ever more power to the people who’ve always had power here. They exist whether you believe in them or not.

At times like these, people ask “what can I do to help?” but what I hear is “what can I do to make this icky feeling go away?” That icky feeling is guilt, and what you can do to help is stop trying to wriggle away from it. I’m not telling you to fix systemic oppression, I’m telling you to acknowledge it. Look at it. Look at it, it’s so ugly. It’s so big. It’s so scary. It’s the monster that’s still there when you turn on the lights. In fact it’s bigger when you turn on the lights. Some people don’t ever get to ignore that monster, some people don’t ever get to stop feeling afraid. Why should you?

I don’t have any answers for you. That’s the point. There’s no happy ending here because it hasn’t been written yet. I’m tired of seeing people scribble “love wins, the end” and slam the book shut, because, sorry, it’s not that easy. It’s a horrible, heart wrenching, terrifying story, but you’re in it: keep reading.

5 Supports That Changed My Life

Autism, Identity, Neurodiversity

It’s been over a year and a half now since I first began to realize I was autistic, and what originally kicked off that process of self-discovery was that the demands of ordinary life were beginning to outstrip my personal resources, and I needed to know why. I’ve since heard this described by autistic people in different ways, from “rolling burnout,” to “my workarounds were no longer working,” to Cynthia Kim’s phrase “playing life in hard mode.” I myself often described myself as being in survival mode on a daily basis, and my therapist once said that I needed to get “out of the basement level of functioning.”

When I sought a diagnosis in spring of 2015, there was some magical thinking involved in my expectations for psychological diagnosis and therapy. My goal was to go from being a flailing, falling-apart passing-as-neurotypical person to a thriving autistic person, which I still think is an excellent goal. However, it doesn’t happen by magic and as it turns out my psychotherapist was not the Blue Fairy.

bluefairy

Image is from Disney’s Pinocchio: The Blue Fairy points a magic wand at the nose of Pinocchio the puppet, who is sitting on a shelf amongst pots of paint.

It’s been a gradual, trial-and-error filled journey, but I’m finally getting to a place where I know what kind of supports I need in order to thrive, and can access them. By no means should anyone assume that what works for me will work for them, which I’m sure my readers already understand. But here are some of the supports that have been integral to my ability to cope with ordinary life without feeling like I am overdrawing my energy bank every single day. These things have gotten me out of survival mode and made me feel more like myself again.

BoseQC15

Image is a pair of black and silver Bose QuietComfort noise canceling headphones.

Noise canceling headphones. The particular pair that I own are Bose QuietComfort 15 (I asked around and was told by a few people that the older 15s are a bit better than the new 25s). This was one of the first things I did for myself after getting diagnosed with autism: I stalked eBay until I found the make and model I wanted for a good price. They are expensive, but if you are noise sensitive and can afford to splurge or save up for them, they are well worth the cost ($250-300 on Amazon, I got mine for under $200 on eBay). Bose QC are high quality, comfortable, and are wireless when you use the noise canceling feature only (that runs on a AAA battery). If you want to listen to music with these you have to use a headphones cord. Bose does also make a Bluetooth enabled pair so you can listen to music wirelessly – those are called SoundLink ($250-280 on Amazon).

Lately I have not needed noise protection quite as much, but for a while I wore my headphones every day, and on low-spoon days (when I didn’t get enough sleep and/or was recovering from a social event) sometimes I wore them all day long. You can still hear people talking at average volume in a room with you, so I could hear my kids and husband and do everything I needed to do – but they dampen really loud and/or high pitched sounds, and also ambient sounds like the refrigerator running, iPads playing cartoons, and so on. I didn’t even realize how much that kind of background noise was zapping my energy until it was gone. The downside of these, besides the cost, is that while they are super comfy by themselves, I have trouble wearing them at the same time as my reading glasses. So people who wear glasses all the time may have some issues with fit. Also, they are (obviously) conspicuous, and I can tell you from experience that if you wear them out in public people WILL stare.

Herebuds

Image shows a pair of white Here Active Listening earbuds in their case, a white iPhone with the Here logo on the screen, and a pair of sunglasses. The sunglasses make me laugh but I choose this photo because it shows the buds, case and app.

Noise canceling ear buds. Yes, I have noise canceling headphones AND earbuds. After I purchased my headphones I started hearing a lot of buzz (no puns intended) in the autistic community about Here Active Listening earbuds. These actually do a lot more than noise canceling – basically they are a smartphone-controlled EQ system for your ears – but I mainly use them to block sound. They started off as a Kickstarter project and now are issuing a trial run of the buds, which means you must sign up on a waiting list, and when a pair are ready for you, you receive a code in order to purchase one pair. For me this took exactly 6 weeks (plus a 2-3 days’ shipping), which seems typical from what I’ve heard. Currently a set of Here buds costs $200 but once out of the trial phase they will likely go up to $250.

I was nervous about buying Here buds because, like many people, I worried about whether they would be uncomfortable. I have small ears and many earbuds do not fit me at all. Here buds come with two or three different sizes of squishy flexible bud attachments, and yes, they fit me well. There are some times when I don’t like the feeling of them in my ears, but most of the time, they’re fine. I would say if you HATE earbuds do not get these, but if you can tolerate a soft earbud, they are pretty comfortable.

The EQ itself is very good, has powerful noise canceling ability and can be adjusted in many ways, by turning up and down the decibels, bass, treble, etc. It comes with a number of preset “filters” and also a custom live EQ setting. One common complaint is that it does not have a directional microphone; that means you can tune out everyone’s voices or tune in all voices, but you can’t tune in the person sitting across a table from you while blocking out the people behind you – though I’ve read they may try to add that feature in a future model.

My main complaint is that my Here buds are a little buggy. Sometimes I hear a buzz in the left one. And I often have trouble with trying to disconnect them from Bluetooth and reconnect within a single day – so it’s usually easier to just leave them on, and switch back and forth between a noise blocking filter like “Office” and a tune-in filter like “Human Speech” if I need to, for example, hear the kids playing in another room, and then tune out again. These issues can be resolved by resetting the buds, but that’s kind of a pain in the ass if I’m in a state of overload and needing relief. Even so, I use these quite a lot. They are less cumbersome than my headphones, I enjoy not having something on my head when I use them, and they’re so small and discreet that it’s very convenient to throw them in my bag when I leave the house in case I need them while I’m out. For anyone with noise sensitivity who doesn’t mind earbuds, I recommend them highly (more than the headphones, if you have to choose).

drugs

Stock photo of an orange bottle of prescription drugs lying on top of a notepad that says Rx. Note: these are NOT my actual pills.

Prescription drugs. This is NOT a support I am comfortable recommending to just anyone, since everyone is different and some people do not do well with medications and some choose not to take them, which is their right. However, I wanted to include meds because for one thing, it’s the truth – they have helped me immensely – and for another, this is me doing my little part to push back against ableist attitudes toward psychiatric medications. I view meds as just another support, one that people should be able to freely choose for themselves, and hopefully should be able to get help finding one that really works for them.

A thing about being a neurodivergent person, particularly one raised and socialized as a girl, is that you tend to defer to anyone in anything resembling a position of authority, even when you know they are wrong. You’re pretty sure they’re wrong. But they probably know better so maybe they are right? I won’t go into all the boring details but I took an antidepressant that wasn’t helping me, instead of the ADD med I knew I needed, for nine months, because I didn’t fully trust myself to know better than a doctor how I felt and what would be good for me. Eventually I found a better doctor and a better support.

Taking a drug doesn’t mean that I don’t accept my neurology – if anything, I am better able to appreciate the beauty of my ADD-autistic mind now that I am not scraping the bottom of the barrel for the inner resources to function. I don’t feel like someone else, I feel like my real self, the self I was before things got overwhelming. Maybe if I could move out to the seaside and live in a wifi enabled cottage and my kids were a little older and more self-sufficient or I had more help – and if life were simpler, maybe I wouldn’t need meds, but right now my environment is such that I need a little pharmaceutical support and I am not ashamed of that. Nor should you be if you need that too.

(Side note that I dislike the terminology of “attention deficit disorder” (I mean, really!) but am using it to be understood by a broad audience. I would love a better term, maybe attention divergence?)

Screen Shot 2016-06-01 at 2.25.55 PM

Image is a screenshot of my Habitica browser page: at the top left are my avatar and stats, with my party’s avatars lined up to the right. Below that from right to left are lists of: Habits, Dailies, To-Dos, and Rewards.

Habitica. Oh how I love Habitica!

When I got off the antidepressant and on ADD meds, the boost in mood was immediate, but executive functioning improvements still took more time and effort. Fortunately I remembered another autistic person I knew online had mentioned months back (when I was still too overwhelmed to even consider it) that they used Habitica to get their stuff done. I suspected that a task manager set up like a video game would be perfect for me, and I was right.

The above photo is a screenshot of my actual Habitica dashboard on my computer (I also have it on my phone but I use the desktop version more). At the top left is my avatar: yep I’m a Level 14 Rogue riding a golden lion and accompanied by a white bear cup, and proud of it. To the right of that are the members of my party, a social function you can use, or not. Below all that I let you see some of my tasks and how they’re organized on Habitica (as you can see I’m in a bit of a nest feathering phase with my to-do list).

I looooove this game. I don’t avoid or forget to check my to-do lists anymore because… it’s fun! This is another thing that I’m sure won’t work for everyone, but for me, getting a couple of pieces of virtual gold for doing the dishes feels motivating. It helps me manage my time, not stress about deadlines, and it also helps me to relax and enjoy my downtime because I don’t have to worry that I’m forgetting an important task.

downtime

Image is a photo my 4 year old took of me. In the foreground are chairs around a table with toys and a bowl on top; in the background I am seen from behind looking out through glass doors – a person with short brown hair and a gray sweater. To my right is a wooden hutch.

Downtime. This is not an app or a medication, but actual downtime. And plenty of it. Half a lifetime of “playing life in hard mode” has conditioned me to feel like I always have to be hustling just to keep up with the minimum standards of getting by. I’m aware that it doesn’t always appear as such from the outside, but I have always felt like I am working twice as hard just to do the things that everyone else seems to do with ease. A former friend once described me as “ambitious,” and at the time I was genuinely shocked by that characterization, but now I think I understand that being driven to succeed, somewhat perfectionistic, hard on myself, and religious about productivity, are adaptations I have cultivated (mostly unconsciously) in response to having an invisible disability.

But the cost of those adaptations is that I repeatedly push myself too far and crash. That worked well enough – I could hide it, mostly – when it was just me, but now I have a family, and it’s too hard on all of us for me to be crashing all the time.

So I am learning to build in lots of downtime as an essential support. It helps that my kids need this too (one of them especially does) so it’s not really an option to skip it. The actual *time* has been available ever seen we chose to homeschool, but the pressure I put on myself to “be productive” every day was still there. Additionally, getting to the point of rolling burnout meant that I never actually experienced relaxation – only crashes. There is no downtime in survival mode, only survival. So, all of the above supports enabled me to access downtime, and untangling myself from the internalized ableism that drove me to always-be-productive is necessary in order to truly relax.

(Easier said than done, I know.)

Hiding

Autism, Friendship, Identity

When I was 11, I had a crush on a boy who was a year younger, a boy from my church, and we also went to school together. Liking a boy in a lower grade than oneself was a thing that was simply not done, and so I concealed our puppy love, until it came out, as such things always do. My friends at the time both teased me for going out with a fifth grader, and embarked on a mission to flirt and lure him away from me. They had me coming and going, mortified, jealous, and exposed.

But that’s only kid stuff. Not like the time in college when I broke out of my usual mode of strict privacy in an attempt to bond with some girlfriends, trying to copy the way they forged their social bonds, by participating in a frank sexual conversation. And then one of them later repeated something highly personal that I’d said. Loudly. To a large group of acquaintances. In front of me.

I don’t mean to be oversensitive, of course. Maybe I was being overly sensitive too when I started my first blog, pouring out my innermost thoughts, kind of like I do here, but anonymously. It was something only my fellow anonymous internet bloggers ever saw until I worked up the courage to send the link to a close friend, the closest friend I’d had in years (maybe ever), to see what she thought, and she flatly replied, “it’s not you at your best.”

I should say former friend, because later that person sent me a letter informing me that she no longer wanted to be my friend, because she wanted to move on from me. That was not the first time that happened to me, by the way. It also happened to me the summer before seventh grade, a similar letter in the mail telling me that my friends had decided to be my friends no longer.

But, hey, I misjudge people sometimes. Like that time in my early 20s when I quit my job, and attempted to retain a friendship with one of my coworkers, sending her an email after I’d left, and including (again, oops! I never learn) a link to my blog. In hindsight, of course, I can plainly see how profoundly NOT my friend that person was, but at the time it didn’t cross my mind that she might cross me. She never replied, but another former coworker did email me, to tell me my “friend” had forwarded my blog to every single person in the company and they’d all laughed at me together and joked that I was crazy and in need of psychiatric help.

That’s the first time I’ve ever told that story to anyone but my husband, by the way, because for several years I couldn’t even think of that episode without feeling humiliation and shame nearly as fresh as the day it happened. I had nightmares about having to return to the company to work there again, for years.

Still, you would think that by age 30 I would have developed a better radar for trustworthy people. Instead, at that stage of life I found myself being dumped by a close colleague I’d worked with intimately for a few years. We were partners in business and, I thought, friends outside of work, until the day – which seemed to me completely out of nowhere – she told me coldly that I was nothing without her and she didn’t need me anymore. Nothing. It might sound like a House of Cards parody now, but it didn’t feel funny as I stood in a parking lot and wept uncontrollably, feeling like the unprofessional child she’d told me I was, but unable to stop myself crying.

Hide everything you care about, hide the things that matter, hide all of your feelings, hide your true self, because letting people see you is dangerous.

Humiliation and shame. Those are recurring themes in my social life over the years. The life lesson learned is to hide. Hide everything you care about, hide the things that matter, hide all of your feelings, hide your true self, because letting people see you is dangerous.

Hiding is an early instinct for autistic people, I think. Because it only takes a few rejections and betrayals for us to note the pattern: expose yourself and you may be hurt. Because we have an intense drive to protect ourselves from pain. Because we often can’t tell which people, places, and situations are safe, so it’s best to just avoid risking it, and to hide our most valued things, our most intimate selves, out of sight.

The trouble is, this is unsustainable. Because like any other human being we long for connection, and so eventually we’ll do it again and take a risk. Like Charlie Brown agreeing to kick the football (a thing I think Charles Schulz well understood – I suspect he was autistic too), we always will end up trying again, one more time yet again, to let ourselves be seen and hope that this time people won’t pull the football away, and let us fall flat on our backs, and laugh.

Sometimes it becomes a weird feedback loop where, because we are hiding, we find ourselves surrounded by people who only actually love the false fronts we put on. Like my former friend who told me my innermost feelings were not “me at my best,” to these people our “best” side is the side we show to please them. This is not a deception, however; we have fully internalized the belief that we must try to be this “best side” of ourselves, the one that earns the approval of our family, friends, teachers, colleagues. We want to be at our best, don’t we? And so we push those embarrassing other parts of us down, out of sight, and we hide.

I still hide, all the time. I hide the things I love, the things I’m passionate about, the things that delight me, the things that I enjoy just for fun’s sake. I hide the books I’m reading when they’re about social justice. I hide the video games I play on my phone because they are probably silly. I hide the guilty pleasure TV shows I watch late at night on Netflix.

I hide my blog in plain sight. That might sound baffling, because it’s a public blog that I write under my real name and I actively promote it on social media, but I also pretend to myself that my loved ones don’t read it. I just try not to think about them ever seeing my words. I never send them links to posts I write, I don’t talk about blogging, I cringe to mention the word “blog” in front of my own husband. It’s not that I don’t want them to know the real me, it’s that I’m embarrassed. I’m afraid. I can’t even let myself think about how exposed it makes me feel because if I think about it for too long I feel tempted to just delete the whole thing. Retreat. Hide.

I don’t have a solution for this; I expect that I never will. I’m just trying, now, to at least stop feeling ashamed for the times that I let myself come out of my hiding places.

When I was a kid I used to read Peanuts in the Sunday paper, and when I was very young I believed there was a chance that someday Charlie Brown was actually going to kick the football. Why not this time? It could happen, right? And then when I got a little older I just felt angry at Charlie Brown – why did he keep letting Lucy trick him, he knew she would pull it away, why did he even try?

But now as an adult I know that Charlie Brown would always try to kick the football one more time because that trying again was part of who he was, and that was one thing no one could never take away from him.

‘Cognitive Dissonance’ at NeuroQueer

Autism, Books, Neurodiversity, Writing

NeuroQueer is a very cool online journal whose editors are some of my personal heroes and favorite bloggers, so I’m honored and excited that they have published my review of In A Different Key: The Story of Autism by John Donvan and Caren Zucker. Many thanks to the wonderful Ibby Grace for making it happen!

***

The press release for In A Different Key : The Story of Autism by John Donvan and Caren Zucker says that this book was “written by two journalists personally committed to widening respect, understanding, and support for the loved ones in their families – and in every family touched by autism.” I want you to keep that sentence in mind as you read my review. I want you to note that the supposed object of this widened respect is the autistic person, and remember that as you read on.

In the preface the authors lay out the premise that this book will be about parents, and that “their two main goals – to find out why their children have autism and to make it go away – remain unfulfilled.” 

#SayTheWord, Not “Special Needs”

Autism, Disability, Education, Neurodiversity

The deeper I go into autistic culture and autistic rights activism, the more I find myself pulled to align my goals, my activism, and my identity with the broader disability rights community.

There’s a social media campaign going on right now to #SayTheWord – it was started by Lawrence Carter-Long, the Public Affairs Manager for the National Council on Disability, and is an active Twitter hashtag. The word, of course, is disabled.

The importance of this campaign is driven home to me over and over again as I see people performing ludicrous and painful contortions to avoid saying it. Reminder that when I make a criticism the way well-meaning people interact with disability, I am not attacking the people (parenthetical reminder that I was immersed in ableism myself not long ago), but inviting people to think about things in a different way.

Instead of saying disabled, nice people say things like:

  • differently abled
  • handicapable (yes, really)
  • physically/mentally challenged
  • special needs

It’s that last one, special needs, that I really want to take aim at, because I believe that seemingly innocuous phrase does serious damage to disability rights.

Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when we require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on.

That’s the first problem, because access is not “special” for disabled people. It’s our right. The Americans with Disabilities Act of 1990, modeled on the Civil Rights Act of 1964, protects disabled Americans from discrimination, requires us to be accommodated in the workplace, and grants us equal access to public spaces and institutions. Other countries have laws in place to protect disability rights in similar ways.

The second problem is, the phrase “special needs” flies in the face of the social model of disability. The social model says, the disabled person’s inability to access things is due not to the disabled person’s failings, flaws, or deficits, but on the environment’s failure to provide access to the things. For example, a Blind person is not disabled because they can’t see, they are disabled because the world was set up by seeing people for seeing people and is made of many things that are inaccessible to non-seeing people.

To make a metaphor of it, imagine taking a brand new car and submerging it in a lake. The car is disabled; there’s nothing wrong with the car itself, it still does everything it’s designed to do, but it cannot operate in its current environment. If were in an environment well suited to its needs and purposes, like say a road, it would be able to do all the things a car does.

Or, take a look at this short (1 minute 26 second) animation explaining the social model – it has captions for those who have auditory processing or hearing disabilities.

So, when you say “special needs” instead of disabled, you are saying, this person needs all sorts of special things to help them do what we can do. We, the people who designed the buildings, the curriculum, the programs, the services, so that they are tailored to our needs – we don’t need anything special to access those things. Well of course!

Some people shy away from the word disabled because they feel that it’s stigmatizing. (Some people feel the same way about the word autistic.) But you don’t remove stigma by dancing around it and being coy and hush-hush about it. That actually increases stigma. Disabled is not a slur and never was; it’s a neutral description. I believe that the truth is people are not just uncomfortable with the word, they are uncomfortable with disability itself.

Disability is a normal part of human diversity; somewhere around 15-20% of the human population is disabled. Like other forms of diversity, the presence of disability in the world enriches humanity in ways that we probably can’t even imagine. Being disabled is not something to be ashamed of, and it’s not something to be scared of; it’s just a fact of life.

I #SayTheWord because I believe that only by saying it over and over again, with pride, with confidence, can we accept disability itself. Say it with me.

(Another great post on this topic is Disabled? I Am Legend! by unstrangemind. And if you are on Twitter, be sure to check out the #SayTheWord hashtag, which is full of excellent.)

buy me pizzaImage says “#saytheword / eisforerin.com / disabled not ‘special needs'” on a blue background.

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”

Autistic Culture: A Primer

Autism, Neurodiversity

I’ve put together this post as a list of must read references for anyone seeking to better understand the autistic community. I’ve heard a few people lately say that they wish there were a style guide to autistic acceptance, or that they are worried about saying the wrong thing, or simply that they want to understand the autistic community better.

Of course, “the autistic community” is not a monolith of unified opinions, preferences, or experiences, but there is a thing called autistic culture. And when it comes to autistic acceptance, the neurodiversity movement, and disability rights activism, there are some generally agreed upon principles that make up that culture.

On using Identity First language (“autistic person”) rather than Person First language (“person with autism”). A survey in the UK recently found that 61% of autistic people use the term “autistic person” and only 18% prefer “person with autism.”

  • “Anyone who needs to constantly remind themselves that disabled people are people should probably spend more time examining their own beliefs and less time telling other people how to speak about themselves or their children.” The Logical Fallacy of Person First Language – Musings of an Aspie.
  • ““Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic.” Identity and Hypocrisy – Autistic Hoya

What does Neurodiversity mean and what is the Neurodiversity Paradigm? There is a lot of confusion around these terms. The simplest way to understand it is to temporarily remove the prefix “neuro” and see what you have: diversity. Now add neuro back in. The neurodiversity paradigm simply posits that neurological diversity is normal and natural and that non-typical brains are not disordered. But if you want to learn more, read these.

  • “Neurodiversity is a biological fact. It’s not a perspective, an approach, a belief, a political position, or a paradigm. That’s the neurodiversity paradigm (see below), not neurodiversity itself.” Neurodiversity: Some Basic Terms & Definitions – Neurocosmopolitanism
  • “Once we’ve thrown away the concept of “normal,” neurotypicals are just members of a majority – not healthier or more “right” than the rest of us, just more common. And Autistics are a minority group, no more intrinsically “disordered” than any ethnic minority.” Throw Away the Master’s Tools – Neurocosmopolitanism

On Applied Behavior Analysis (ABA) therapies. I know that this is a red hot topic and often I just avoid it altogether for that reason. I’m realistic and I know that most parents embark on ABA with good intentions – after all, it’s said to be the “gold standard” and “only evidence based” autism therapy, over and over again – but I just ask that people listen to autistics on this topic and seriously consider our perspectives. (Also, remember what the road to hell is paved with.)

  • “And there is a good chance that the two of you — the Autistic adult and the parent of an Autistic child — are not even talking about the same thing when you say “ABA.” Major organizations (particularly Autism Speaks) have lobbied hard for Medicaid and insurance companies to cover ABA therapy for Autistic children.” ABA – Unstrange Mind
  • “Why do we not use ABA for the neurotypical population?  This is where the ethical question must be considered.  This is where the “science” behind the use of ABA begins to fray.  If we really believe Autistic people (and children) deserve the same respect, are truly considered equal as those in the neurotypical population, ABA presents some real problems.” Tackling That Troublesome Issue of ABA and Ethics – Emma’s Hope Book
  • “People who can’t say no, can’t say yes meaningfully.” Appearing to Enjoy Behavior Modification is Not Meaningful – Real Social Skills

On functioning labels. Like most autistic people, I completely reject functioning labels (calling autistic people “low functioning” or “high functioning”). They’re inaccurate, ableist, and meaningless (not to mention bafflingly binary!). In the same vein, I also do not use terms like Aspergers, Aspie, HFA (high functioning autistic), classic autism, etc. – they are all just functioning labels in disguise (very poor disguises if you ask me).

  • “This approach does not work and devalues who we are. Besides, the world misses on getting to know our true selves, it misses on learning that there are many different ways to accomplish things, and that definitions like “success” and “independence” are abstract, unique to each individual.” Attitudes: Grading People – Ollibean
  • “One of the central problems of functioning labels is that they presume a uniform set of competencies. Just as neurotypical people aren’t uniformly skilled at everything, autistic people have varying levels of competence in different areas of our lives. For some of us, these levels can be wildly and incongruously varied. They can shift over time, meaning that we might appear to very competent in one area today and much less so a month later.” Decoding the High Functioning Label – Musings of an Aspie

That seems enough (possibly too much?) for an introduction. I hope if you enjoyed any of those blog posts you will read more within the blogs I’ve linked, and as always my Autistic Resources page is chock full of awesome blogs and websites (continually being updated!).

Please feel free to leave a comment or question below, suggest other topics to cover, or suggest more blogs that you think I should read!

Unfurling

Autism, Identity, Neurodiversity

For the past two New Year posts on my blog I’ve gone with a botanical theme: “Green Shoots” in 2014 and “New Leaves” in 2015. Perhaps I should call this post “Flowering,” but then that would leave me with “Gone to Seed” in 2017, wouldn’t it?

Also in recent years I have chosen a word to be my mantra or theme for the year – I was doing this before I knew “One Word” was a thing, which I don’t think makes me extra cool, more like extra out of touch with pop culture. In 2012 my word was PEACE, in 2013 GROWTH, in 2014 TRANSFORMATION, and in 2016 it was KNOWLEDGE. I choose these words in kind of a woo manner, by plucking a word intuitively from my subconscious as it comes to me. They always end up feeling on point, probably in much the way that horoscopes are on point, by being sufficiently vague and universal enough to never not feel true.

This new year I didn’t have a word come to me as such, but more of a feeling. I’m going to call it STRENGTH because I must describe it somehow. I suppose what I am predicting, or at least hoping, is that this year all the upheaval and remaking of my world will solidify and stabilize somewhat into something more cohesive and robust.

I don’t know if you’ve ever seen one of those Internet videos that shows how a caterpillar turns into a butterfly – what happens inside the chrysalis. I probably hadn’t thought too much about it before but if I had thought about what happens to the caterpillar, I guessed it would be sort of like how a tadpole turns into a frog: this part grows, that part shrinks, shapes change, and voilà.

Like most people who saw the video, I was shocked to find out that that the caterpillar breaks down into a kind of goo before it re-forms into a beautiful winged insect. It’s not completely formless, as it still possesses a basic nervous system, but indeed the poor creature breaks down almost completely into a primordial ooze. From that the butterfly assembles itself.

This feels an especially fitting metaphor for me as a person who’s undergone radical transformation and growth, and acquired life altering knowledge in the last few years. I don’t know if the caterpillar feels fear, pain, confusion, or hope as its old form is undone, but – well.

When I was a young child I once saw a monarch butterfly hatch from its chrysalis, inside of a jar that my best friend had kept it in with a sprig of milkweed. My friend gently laid the jar on its side in the grass so the butterfly could walk free on its own. What surprised me then about the animal was how delicate and uncertain it seemed. It was not the triumphant moment I’d imagined in which the butterfly burst free from its shell and flew away. Instead, it emerged slowly, tentatively. Its wings were damp and took some time to unfurl. Its legs seemed a bit frail for the first minutes as it stepped into the open lawn. It took time to rest and gather strength before it could fly.

This is what I envision for myself in the coming year: to unfurl these fragile wings and grow stronger in my sense of self, to begin feel my power in my life, in my work and in my family. I hope that my whole family will feel a new strength and stability this year, to gain confidence in our endeavors and in our connections with each other.

butterfly

Image is a yellow and black butterfly sitting on a green leaf, with the text: This is what I envision for myself in the coming year: to unfurl these fragile wings and grow stronger in my sense of self. – eisforerin.com

My Top Ten Books of 2015

Autism, Books, Neurodiversity

I did not read as many books in 2015 as I usually do, and many of the books I read were graphic novels – so, much lower word count this year, if I were counting. It was hard for me to focus my attention on anything book-length, unless it were especially compelling. As a result, of the books that I did read, there are some real superstars. Here are my top ten, in chronological order.

(Note: book links will now take you to Goodreads, since linking to my Amazon affiliate shop is a pain in the ass and I never make any money on them anyway.)

Nerdy, Shy, and Socially Inappropriate by Cynthia Kim. Although this book talks about “Asperger’s syndrome,” terminology that I reject and Kim later did as well, this is one of my favorite books about being autistic. Like me, Kim found out she was autistic as an adult, after her “work-arounds” in life started to fail and she began to wonder why exactly she was having a difficult time coping. Obviously this is a great book for anyone who has an adult diagnosis (self- or otherwise) of autism, but it’s also really great at explaining the various aspects of being autistic, just in general. She talks about marriage and parenting a little bit, gives a lot of relatable stimming examples, and I believe this book contains probably the best explanation of executive functioning ever.

This Is How You Lose Her by Junot Diaz. Diaz is an author I need to read more, and I’m not sure why I haven’t except that I keep forgetting. This book made me uncomfortable, but in a good way. Yunior, the character at the heart of these short stories, is an asshole and a womanizer, a man I was both drawn to and repulsed by. The writing is raw and honest and has an energy that pulls you in and holds you there.

Blankets by Craig Thompson. Blankets is the book that ignited my passion for graphic novels this year. It’s a beautiful, heartbreaking memoir about falling in love and losing your religion, about dysfunctional families and the exhilarating heartache of adolescence. I loved it so much I wished I had written it.

Schulz and Peanuts: A Biography by David Michaelis. This is a special interest topic so I’m sure not everyone would enjoy this book, but I really enjoyed it, and it was enormous so it took up a lot of headspace for me this year! Despite the way the author seemed disdainful and misunderstanding toward Charles “Sparky” Schulz through much of the biography, I felt that Sparky shone through as a complicated, often lonely person with a deep passion for his cartoons.

Stitches by David Small. Another outstanding graphic memoir, the word that always comes to mind when I think of Stitches is “haunting.” It’s dark and devastating, but beautiful. The genius of this book is in the way the words and images are perfectly interwoven to tell the story; often the drawings take over the storytelling when words simply cannot. I never wanted this book to end.

I Was A Child: A Memoir by Bruce Eric Kaplan. I adored this weird, weird little memoir. Kaplan is better known as BEK, creator of the minimalist, scribble-like cartoons that the New Yorker made famous. What would a minimalist cartoonist write if he wrote a memoir? A series of little moments of memory, small keyhole views of childhood, perfectly described. Thinking about this book makes me want to read it again and again.

Furiously Happy: A Funny Book About Horrible Things by Jenny Lawson. I have to admit that this book just barely edged out some others to make my list. I enjoyed this book a lot, it was funny and entertaining and made me feel good, but it didn’t take over my mind the way the other nine on the list did this year.

Between the World And Me by Ta-Nehisi Coates. It is difficult for me to review or even summarize this book because everything I try to write about it feels small next to the magnitude of Coates’s writing. The book takes the form of a long letter to his son, in which he weaves together his own life story with the larger story of systemic racism – the experience of being black in America. His central argument is that we cannot know how to move forward without taking an honest look at where we’ve been and where we are – but he does this with more elegance and beauty than I can rightly convey.

Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently by Steve Silberman. I had, and still have, a complicated mix of thoughts and feelings about this book. Its strength lies in telling the world the true history of the pathologization of autism and the way the false concept of an autism epidemic came about – the stories of Asperger, Kanner, Lovaas, and assorted historical figures of that era like Bernie Rimland and Bettleheim and such. Many people have correctly criticized him for white-washing, male-washing, and geek-washing the autistic community and wished that he had done a better job of portraying autistic diversity. Over time I’ve come to think that he should have actually cut even more from this book and just limited his scope to his areas of strength – telling the history of autism research. Autistic people can do a better job of describing our own culture.

The Real Experts: Readings for Parents of Autistic Children ed. Michelle Sutton. As a fitting follow up to Neurotribes, here is an excellent collection of autistic people describing their own culture and sharing their experiences of the world. It’s another book that’s hard to sum up, in this case because of the rich diversity of voices and topics it covers, with essays from Nick Walker, Ally Grace, Emily Paige Ballou, Alyssa Hillary, Cynthia Kim, Kassiane Sibley, Sparrow Rose Jones, Michael Scott Monje Jr., Elizabeth J. Grace, Briannon Lee, Morénike Giwa Onaiwu, and Amy Sequenzia, with introductions to each author written by Michelle Sutton. I highly recommend to anyone who is interested in what it means to be an autistic person in the world, from the point of view of those who know best.

Kindness Without Respect is Worthless

Autism, Neurodiversity

Two stories co-occurred in my Facebook feed this past week:
*The Autism Cake (link goes to a great commentary by The Crazy Crippled Chick because I can’t ever bear to link you to a news piece calling it “heartwarming.”)
*Abuse at an Adelaide Autism Center  (Australian news story; see full text here: AEIOUabuse.)

I suspect some readers will instantly grok how these stories are interrelated, but let me break it down for you, beginning with the cake.

The story, brought to us by Cake Lady herself, goes thusly, and all the emphases are mine here: Cake Lady walked into a supermarket and to the bakery counter. She asked the person working at the counter to decorate the cake with a Happy Birthday message in icing. “After taking a long time,” the bakery worker presented the cake, Cake Lady smiled and thanked her before looking at the cake, then she looked at it while she walked away and laughed, but, “didn’t really mind that it looked so bad – I thought people would think it was funny.” At checkout, several other employees gathered round the cake, discussed it, took pictures, and finally told Cake Lady that the bakery worker was autistic and “you probably made her day” by smiling at her and saying thank you. The moral of the story, Cake Lady concludes, is “kindness is important.”

Where to begin? There is no kindness in this story at all. Not when Cake Lady smiles and says thank you in an ordinary exchange of goods at a supermarket. Not when she laughs behind the bakery worker’s back and how bad the cake looks – and not when she decides it is redeemed by comedic value for being so badly done. Not when the other supermarket employees gather around to gawk and not when they disclose the bakery worker’s autistic identity to a stranger without her consent so that they can applaud her for having a normal human interaction with a disabled person.

There is no kindness when Cake Lady posts this story to social media, with photos of the cake she finds so comically bad, literally to congratulate herself for “kindness.” (??) There is no kindness in the many many media outlets who published this story as an example of a heartwarming story of human kindness, without ever getting the perspective of the bakery employee, as if she is not a person at all, merely a prop. Which she is.

So what’s all the hype about? The reality is that our society does not value disabled people. We (yes I’m saying “we” because autism is a disability and I am autistic – it would feel weird to say “they”) are seen as dependents, non-contributing entities, demi-humans whose lives are just a weak, broken, inferior version of “real,” “normal” people’s lives. Mostly, disabled people are just flat out ignored.

Insofar as non-disabled people have any positive feelings about us, they are based around condescension and pity: “Oh, that poor person. It’s so inspiring that they _____!” [have a job, were allowed to play for .5 minutes in a basketball game, went on an arranged date to the prom, etc.] “It truly gives me faith in humanity, when a normal person acknowledges the existence of disabled people in any way!” This is called Inspiration Porn. (Link opens a Ted Talk by the kickass comedian Stella Young.)

I see plenty of Inspiration Porn stories – usually they are about disabled people or homeless people, bonus points for both! – but Cake Lady has stuck with me. Why? Because it’s so flagrantly NOT an act of kindness, yet is being lauded as a shining example of goodness in the world. Cake Lady did not do ONE single kind thing in this story – I challenge you to name one! What people are lauding, really, is that: 1) a disabled person is allowed to have a job, and 2) the normals didn’t yell at her for fucking up at work, because 3) they feel bad for her because she is just a poor poor autistic person who probably doesn’t understand anything and it’s a special treat for another human being to SMILE IN HER GENERAL DIRECTION. That, it seems, is more than she deserves.

This story makes me angry and I’m on a long rant about this, but it’s my blog so I’m doing it. I haven’t been able to write in almost three weeks because this kind of shit is just relentless and it weighs on me.

What does Cake Lady have to do with the other story? In Adelaide, Australia, the AEIOU autism center for young children is facing allegations that workers abused some of their young students, leaving bad bruises on their legs – parents suspect that this is related to potty training at the center. These are vulnerable non-speaking children who were not able to tell their parents in words what was happening to them, but they told them by becoming extremely upset about going back to AEIOU each day. The center’s response is to deny, deny, deny. Other parents are rallying to the staff’s defense, claiming that because it didn’t happen to their children, it didn’t happen to anyone.

Autistic children are not respected. They face the double whammy of being children, who generally are not respected by adults anyway, and disabled to boot. Autistic children are very often treated with this kind of “kindness” without respect: they are treated well as long as they are obedient and don’t have too many “behaviors.” Another way to describe this is “tolerance.” As Amythest Schaber said in their brilliant talk at the Richmond Autism Research Fair, “There is no love in tolerance. Tolerance is inequality. Tolerance says, ‘Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on.'” 

The punishment for not staying meekly in the mold of the poor poor disabled person who is grateful for the slightest acknowledgment of their humanity is pain, abuse, and sometimes even death. The AEIOU case isn’t even that unusual – as noted in the Autistic Family Collective statement on the case, there had been five separate cases of abuse against autistic children in a 12 week period when the AEIOU story broke – in Australia alone. But this goes on everywhere.


In a world where it is considered a kindness to laugh behind an autistic person’s back instead of to their face and then publicly congratulate oneself for conducting an ordinary business transaction with a disabled person in a polite manner, abuse of disabled persons is a given. It’s a GIVEN. Abuse and murder are the inevitable outputs of a society that fails to have a very basic level of respect for disabled people, that does not even seem to know how to recognize disabled people as fully human – complex, unique people who experience the full range of human emotions that anyone else does (and in the case of many autistic people, an even richer and more intensely felt range of emotion), who are self-aware no matter how old or young they are, who need real human connection and shouldn’t have to settle for tokenism, inspiration porn, and abusive relationships.

I get frustrated, these days, when I see people sharing the Mr. Rogers quote that says, “When I was a boy and I would see scary things on the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.'” This is good advice to comfort children, but for adults it seems to be, more and more, an excuse for doing nothing. It sounds like people are just asking to be allowed to continue to ignore the bad and wrong things, to not have to talk about them. You’re a grownup now. Stop looking for the helpers and be one.

You don’t have to be an activist. I know more than many that it’s hard enough sometimes just to get up and face each day, without feeling obligated to join a war against evil. But I believe in the contagion of ideas as a powerful social change agent. So even if you never join a picket line, sign a petition, write a blog, or even share a Facebook post, you can be a helper by changing your mind. If you’ve gotten to this paragraph, you’ve at least read one blog post by a disabled person, and that’s a start. There are so many others out there. Someday when you’re bored, or maybe right now, you can go to the “Autistic Resources” page of my blog, link at the top bar menu or right in this sentence, and read one more. And that’s just for autistic resources. There is a wealth of voices talking about lived experiences of being disabled, or queer, or persons of color, or in so many other ways the people who are calling out for social justice. Once in a while, hear them. It will change you.

And remember. Kindness without respect for others is worthless at best, and actively harmful much of the time. Kindness without respect is what we already have in abundance: inspiration porn and tolerance. We don’t need more of that.