How many people are affected by ableism?

ableism, Autism, Disability, Neurodiversity

[The following text is also a transcript for the featured image description]

How many people are affected by ableism?

Everyone is affected by ableism.

* At any given time, about 1 in 5 people worldwide has a disability.

* People who were not born disabled, or aren’t currently disabled, may become disabled later in life.

* Some people who do not identify as disabled or recognize themselves as disabled are in fact disabled and directly affected by ableism; for example, people with psychiatric disabilities such as depression and anxiety.

* Disability Rights are highly intersectional; civil rights issues for women, people of color and LGBTQ+ people are intertwined with disability issues. Disability rights also overlap with issues such as healthcare, education, poverty, and more.

[sidebar has an image of a caution sign and the following text]

CAUTION

Descriptions of ableism as a disorder is this series are satirical and not to be taken literally.

Ableism is not a form of mental illness or psychiatric disability; in fact, blaming bigotry or prejudice on mental illness or any other disability… IS ABLEIST!

Intro: Ableism Awareness Month

Part 1: What is ableism?

Part 3: What causes ableism?

Part 4: Is there a cure for ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

April is Ableism Awareness Month

ableism, Autism, Disability, Education, Neurodiversity

For several years, autism organizations led by non-autistic parents and professionals have focused on Autism Awareness in the month of April.

Autistic people have pushed back on the Awareness campaigns (and their usual pathologizing, othering frameworks) by asking for less talk of awareness and more acceptance for autistic people of all ages.

This year I was inspired to flip the old script with a new kind of Awareness campaign:

This April is Ableism Awareness Month

Join me in the coming weeks as I roll out some basic information and awareness of this epidemic of ableism, including examples and symptoms, treatments and alternatives, and more.

Part 1: What is ableism?

Part 2: How many people are affected by ableism?

Part 3: What causes ableism?

Part 4: Is there a cure for ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

Image has the text "5 Things I've Learned About Parenting & Gender" followed by five humans figures in pink, white, blue, purple, and green

5 Things I’ve Learned About Parenting & Gender

Identity, Neurodiversity, Parenting

 

When I had my first baby, I had good intentions about not boxing him into a prescribed, stereotypical gender role. But I also had a lot to learn, about gender and about parenting too.

Seven years later, I still have plenty to learn about gender issues (and about parenting too!), but here are a few things I can share:

  1. Gender is not binary.

It’s hard to believe now that I ever thought there were only two genders – especially since I have never fit all that well into the pink/blue dichotomy myself – but I did make that assumption, and a lot of other nice people do too.

Now that I know better, the whole idea of a gender binary seems patently absurd. Nothing about human beings is binary. Do we only come in two different skin tones? Two eye colors? Two body types? Two sexual orientations? Two personalities? Sexual anatomy isn’t binary either, but more of a spectrum, with “intersex” being a term for all of the varieties of anatomy that lie between the binary options most people are familiar with.

So why would gender be the only thing about us that’s so black and white?

It isn’t.

  1. Being transgender is not rare.

When I first had kids I assumed that being transgender was so rare, my kids so statistically unlikely to be trans, I didn’t really have to bother incorporating trans issues into my parenting. I was wrong on two counts. Not only is transgender relatively commonplace, but also, even if my kids are not trans that doesn’t give me a pass to not teach them about transgender identity and trans rights.

The most recent study I’ve seen estimates the US population of transgender people to be around 0.6% of the population; however, I believe it’s most likely much higher, because the study counts people who self-identify as trans. Not only is it not at all safe to be transgender in the US today – on average, over two dozen trans people are reported murdered every year – but many people don’t know that transgender identity includes non binary people, and many don’t know that non binary gender identities exist at all.

Even if my kids don’t fall into the category of transgender people, ignorance always promotes prejudice and bigotry, so I now know it’s my obligation to be inclusive whenever we talk about gender.

  1. Children begin to develop a gender identity around age three.

It’s typical for children to begin to develop a sense of their own gender as early as age two or three, and that identity tends to firm up around age five, though it may become more fluid again later.

However, many adults persist in perceiving this to be a normal gender development only for cisgender* children, and will characterize young transgender children as confused or disordered when they assert their gender at this young age. It’s not fair, humane, or even logical to hold some genders to one developmental yardstick and some to another. If a child in preschool tells us he’s a trans boy, how does it make sense to question if he’s really sure – do we ever ask this question of a cis boy?

The sad irony, of course, is that these waters are muddied by the aggressive efforts of adults to police the genders of young children – even of infants! From the color coding of onesies and toys, to crowing over baby girl’s first pigtails or boy’s first handsome short haircut, to the incessant messaging in children’s media, the pressure to be cisgender that adults put on children from the moment they are born is completely suffocating.

Which leads me to…

  1. It’s Not Enough for Parents to be Passively Nonconformist.

It would be nice if raising our kids with gender freedom was as easy as just NOT gender-coding their toys and shoving them into stereotypical cis roles, but alas, the world around us is hell bent on playing Gender Police. And that means that we have to be vigilant about countering their influences and giving our kids the critical thinking skills to make their own judgment calls on what the world says about gender.

Sometimes the messages are overt – we once had a young friend over who told one of my sons that his stuffed owl was “a girl’s thing” because it was pink. Most of the time they’re more subtle, and pervasive, almost atmospheric – I’ve noticed how many of the kids’ iPad games ask for them to input their gender, and the only options are boy or girl, or pink avatar with long hair versus blue avatar with short hair.

So as a parent, my role goes beyond opting out of gender policing – I have to also equip them with the tools to stand up to gender policing when it happens to them, and to question and counter the cisnormative** messaging they find all around them.

  1. Kids are far more flexible and open-minded than us, if allowed to be.

It’s true that children are not born with prejudice and bigotry in their hearts, but they are born ready to adopt and perform social norms (to varying degrees – neurodivergent children are often slightly less oriented toward conformity, which I count among my blessings in life!). Kids who learn transphobic and sexist culture at home are quick to carry it out in their interactions with peers.

I’ve heard so many adults claim that their young cisgender children are naturally masculine or feminine without any coercion from parents, without acknowledging the subtle ways kids’ gender is policed from birth – and even before birth, with many well meaning parents eagerly pinning a gender on their fetus as early as a 20 week ultrasound! If not subjected to this pressure, however subtle and seemingly benign, most young children could and probably would be more fluid and flexible in their explorations of gender.

One day I was looking at a My Little Pony cartoon with my younger child, and I commented on a pony described as “he” that I’d thought the character was a girl. My kid told me, “well, he’s kind of a boy and a girl at the same time.” Without having it explained to him, my 4 year old easily grasped the concept of a non-binary gender identity.

In that moment I could have chosen to nudge him back toward cisnormative culture, or simply affirmed his intuition; of course, I did the latter. “Oh, that’s cool – you know, some people in real life are a boy and a girl at the same time too.” Life is full of such teaching moments, and how we respond to them influences how our children view not only themselves, but other people who are unlike them in various ways.

It’s challenging at times to walk the fine line of countering cissexist*** messages without insulting the things and people our kids like. It can be painful sometimes to see them exposed to ridicule from peers who are raised differently. But the rewards of raising kids with gender inclusivity are plentiful. I’m so grateful that my children are able to enjoy a wide variety of entertainment and cultural interests without being hemmed in by gendered expectations and stereotypes – I see how this gives them confidence, a sense of self, and pure joy unpolluted by prejudice. And my hopes are high that they will be more compassionate people in the long run, with a good foundation built on principles of equality and respect.

* cisgender or “cis” means a person is the same gender as the one designated or assigned to them at birth based on genitalia – i.e., if a baby is born with a vagina, they are typically designated by doctors and/or parents as a girl but may not be so.

** cisnormative means it’s implicitly assumed that people are cisgender, and/or that cisgender is the default position and transgender is an exception or in any way an “other” type of person – e.g., the common anatomy lesson we give to kids that “girls have vaginas and boys have penises” is cisnormative and not factually correct.

*** cissexist means biased against trans people, including non binary and gender non-conforming people.

Image has the text "5 Things I've Learned About Parenting & Gender" followed by five humans figures in pink, white, blue, purple, and green

Image has the text “5 Things I’ve Learned About Parenting & Gender” followed by five humans figures in pink, white, blue, purple, and green

When Do We Get to Be Autistic?

Autism, Friendship, Identity, Neurodiversity

img_3994

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I’m seeing a new therapist and I’ve told her how much I like to write; last week I told her that I haven’t blogged in a while because I haven’t had the time, but this morning I told her that I’ve realized I am not writing because I don’t know what to say.

She told me that it’s important to keep doing this so that I have a voice.

So I’m going to try to say some things.

*

I have a friend who is autistic and also a kind of mentor to me, someone who’s been around for longer and I look up to her because I admire her sense of fairness and the way she applies a gentle touch to fighting for social justice. And also because she has this way of leaving me with these jewels of words that I keep forever – and she probably doesn’t realize she does this, but perhaps she will recognize herself when she reads this – like when I fretted that my inability to express convincing enthusiasm would put her off and she told me, “you don’t have to do the face with me.”

And when we were talking about another autistic person who was under fire for the way they talked to other activists and she said that she was sad because she knew this person was kind and thoughtful and was being misunderstood because of their communication style, which made her wonder, “when do they get to be autistic?”

*

This is a post that is not about me, or it’s partly about me, but it’s also about all of us. We’re pattern seekers, you see – we Autistics. Or maybe “pattern receivers” is a better phrase, as so often the patterns just seem to be there, revealing themselves to us. The pattern that lately reveals itself to me everywhere I turn is that it’s still not acceptable, sometimes not safe, to be Autistic in this world, no matter how much lip service is paid to awareness or acceptance.

This is about me, and it’s about all of my friends.

It’s about my friend Michelle who writes, “when I am authentic in my neurodivergent way, I see a pattern of becoming distant from friends and isolated from community.”

It’s abut my friend Ally who writes, “Pretty much every person I talk to or meet, is probably ableist and would think that people like me should be prevented from being born or should not be spoken about with accurate descriptive language because it’s uncomfortable and we all know that Big Pharma is taking over the world and just inventing stuff to medicate and don’t you know that autism is just an excuse?”

It’s about my friend A whom I won’t name without permission but who has spent hours with me dissecting what is really going on in our conflicts with non autistic people and how to balance self care with bridge building and… well. Without A I don’t know what I would have done these past few months, really.

It’s about the people at the Autism Women’s Network meetups who express how much they long to show the world what they can do, what they have to offer, what they’re good at, but struggle to attain even the most basic supports, not because those supports are impossible for others to provide, but because the people in neurotypical environments think that we should be able to just suck it up and deal with: painful lighting, overwhelming noise, fast transitions, sudden schedule changes, our inability to communicate verbally under stress.

*

The awkward thing about being an autistic adult who communicates in words is that we are expected to have “overcome our autism” when we have no such goal even if it were possible (spoiler alert: it’s not). I have personally been congratulated for overcoming autism: a well meaning gesture that means nothing at all. For a time I thought this was a kind of applause for having the ability to pass, but I have learned that it’s code for “we expect you to act normal now and anything that you can’t do we will consider a personal failing.” For adults who were not diagnosed until adulthood or are not diagnosed but have self identified, this goes double.

We still ping as different, as other, as unacceptable; but everything that pings as non-typical about us is attributed to a cause that is NOT autism – it’s just a character flaw or something we are doing wrong.

– if you have social anxiety, actually you are just
—> rude, unfriendly, antisocial, self-isolating, a misanthrope, a snob

– if you have a direct communication style, actually you are just
—> rude, confrontational, aggressive, insensitive, argumentative

– if you are drawn to deep connections in conversation, actually you are just
—> too serious, too intense, a downer, socially awkward

– if you have sensory aversions, actually you are just
—> fussy, entitled, irritable, negative

– if you have executive functioning challenges, actually you are just
—> lazy, disorganized, incompetent, a complainer… or not that smart.

So the people who “just don’t see it” when you say you’re autistic or who think it’s so great that you’ve “overcome” the way your entire mind and body are designed simply because you can say words with your mouth or type words with your fingers (sometimes), definitely see that you are not like them. They’ll tell you so all the time, in their own way.

*

I worry that because I fumble to express myself in a room with people but manage to find my words when I’m alone with my fingers on the keys, I will be seen as

—> disingenuous, passive aggressive, two faced, or just plain

Crazy, like those old coworkers once called me when they found my blog…

I’ve had a pervasive feeling of not being safe lately that’s been impossible to shake. I don’t mean that I have felt myself to be in physical or mortal danger, but my soul, my true self, is afraid to come out. I’m aware of being too much, too intense, too serious, too too… . I worry that owning the word disabled will cause people to see me as incompetent. I feel that asking for more help or support will cause others to think that I can’t do it at all. I can’t stop pushing myself to prove my worth through my hard work. I will wear myself out trying to earn a place in the world.

I look on others who come out to the world with powerful vulnerability, who find their strength in softness, with keen envy. I feel miles away from that. Light years away.

I don’t feel brave enough to speak. But someone told me that I should keep writing because I need to have a voice. If this is my voice, I have some things I’d like to whisper.

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.)

‘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!

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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!