ink-and-daggers:

Please don’t ask me what I do unless you want to talk about it
And I mean really talk about it
This is not a question that elicits a short response from me
It will not lead to reciprocal small talk

“So what do you do?” comes the polite question
“I work with autistic children” I say
Sometimes it’s “autistic children”
Sometimes it’s “children with autism”
The difference is meaningful to me and to others
but is usually an irrelevant distinction to the person I’m saying it to
I’ve been in this field for a while now, and I’ve said it more times than I remember
When you say the same thing to a lot of different people, a funny thing happens
You find their responses are predictable

There is one response in particular that rattles me
Not because it’s particularly rude, in fact it’s supposed to be a compliment
But when I hear it, my first thought is how desperately I want to punch the speaker’s mouth
though maybe the lecture I launch into instead is worse

“Oh, I work with autistic children” I say
“Wow,” people reply
“That must be so hard!
I could never do that
You’re a really amazing person
I bet you already have your golden ticket straight to heaven”

I hate this idea that it “takes a special person to work with special people”
It’s a self fulfilling prophesy
And it’s a deadly one
Because the unspoken idea here is that people with disabilities don’t deserve interaction, patience or decency from “normal people”
When you say “I could never do that,” I don’t hear the intended compliment
All I hear is typical people are dangerous to those who fall outside the norm
And this is so perfectly ordinary that it can be delivered disguised as a compliment

Related to this is the assumption it makes about care providers, educators, and others who work with disabled folks
That we are kind, loving, patient, unselfish and saintly
When I say “I work with autistic kids” you know my job
But you don’t know anything about what I do
When I say “I work with autistic kids” I can mean a lot of things
Maybe I’m the bestest teacher person ever, Annie Sullivan reincarnated
Maybe all it means is that I play on my smart phone while ignoring the kid I’m providing glorified babysitting for
Or perhaps it means that I hurt children mercilessly in the name of therapy
Or even that I hurt them just because I can
Maybe it means all of these things depending on the context
Maybe it means something else entirely
But one shouldn’t assume anyone is anything good just because they work with a vulnerable and misunderstood demographic
particularly if their role is one of power

I often wish I kept a list of all the funny and cute things kids say and do while I am at work
There are so many, it’s impossible to remember them all
There is another list, one I keep in my mind, one I wish didn’t exist
Things my clients’ parents and colleagues say

A teacher was getting frustrated with my interfering
We had a student who has been having aggressive outbursts at the end of the school day
His behavior plan was to ignore his requests to talk about what was bothering him and redirect him to work
When this failed, which it always did, we were to take a spray bottle full of vinegar and administer a dose into his mouth
In radical behaviorism, this is called an “aversive” or a consequence
But it did not work for him, and would have been dehumanizing and unnecessary even if it did
Positive punishment, negative punishment, neither were right
So on my own time I researched alternatives I knew the school hadn’t tried
I showed this teacher a different program I found
She wouldn’t even look at it
“He just needs a different consequence”

A mother picked me up late
We were supposed to go skiing with her twins
They hated skiing, the day always ended with at least one meltdown
But she insisted it was an opportunity to learn a normal recreational life activity, so we went every winter weekend for two years
When she finally arrived, I saw she had been crying
I looked in the back seat and saw the boys had been crying too
Uncomfortable, awkward, unsafe feeling
I cautiously asked what’s wrong as she sped off
“They’re going to be like this forever,” she started, not caring the twins could hear her
“They’re going to be like this forever and there’s nothing I can do about it. I’m going to put them in a group home and fucking kill myself”

A different teacher thinks I’m stupid and naive
One of our students had finally stopped running away from us in terror
I commented that it was nice he was finally trusting us
She seemed almost amused that I could project such a human emotion onto him
She picked up a toy and put it in a basket
“You know they just think of us as moving furniture”

Another mother interrupted my therapy session to tell me for the hundredth time how her husband left her
Her son hovered nearby, waiting as patiently as he could
Flapping his hands, spinning in circles, listening to every word
“I know he left because of *him*”

A former colleague and I went out to dinner
She told me about her new job, still working with autistic kids
Compliance is very important to her, and she told me a story highlighting this
Her student wouldn’t put a toy on a shelf
So she tried to force her to do it for several hours
The student was very stubborn, but so was she
“I didn’t care if her mom was out in the car crying,” she said
“I was going to make that little bitch do it”

A mother called me early on a chilly, but sunny February morning
The bright light from outside bounced cheerily off the floor of my dark bedroom
I was supposed to work with her son, Jordan, in a few hours
His stepfather regarded him as “retard” and “Jerry’s kid”
They made him sleep in a bathtub and devised other cruel punishments for when he was disobedient, wet the bed, or simply existed
Myself and neighbors reported them to child protective services several times
But he was never removed from the home
I said good morning and asked her what’s up
Pause
“Jordan died”

When I tell people about Jordan, their responses are also predictable
The one I hate to hear is that “he is in a better place now”
People tell me this to be nice
To help me get over it, to realize it’s actually better this way
I don’t believe in god or an afterlife
And even if I did, this sentiment only provokes anger in me
Jordan didn’t belong in an abusive home
But at fifteen, he also didn’t belong dead

In high school, I had an acquaintance who hung herself in the shed behind her apartment
She was beautiful, intelligent, and carried a presence that lit up a room when she entered
But she was depressed and alcoholic
Her family and boyfriend treated her like trash
When I tell people this, they don’t say “she’s in a better place now”
They say, “That’s so terrible and sad”
Even though she was completely miserable from a lifetime of abusive relationships
Even though she wanted so badly to be dead, she ended her own life

You know who wasn’t miserable?
Jordan
He loved fast food
He loved cartoons
He loved helping others
He loved his baby brother
He even loved his piece of shit abusive parents
Why is death his best option?

I wonder constantly why disability is so often skipped over in social justice conversations
I can tell a lot about a person’s politics from how they answer this simple question, “what do you think of disabled kids?”
The answer I hear a disappointing amount of times is “oh, I’ve never really thought about it”
You probably know the statistic about one in five American women being raped or sexually abused in their lifetime
But did you know that for women with developmental disabilities, it’s upwards of ninety percent?
You probably know something about police brutality
When you get home, Google “black and autistic” and see what comes up
Our culture obsesses over mental illness and violence
When we talk about gun control, very often it’s framed as simply “keeping guns away from those crazy people”
Though if you look at the data
Being classified as mentally ill puts you at extraordinary risk for violence from so called “normal” people, not so much the other way around
With Americans with disabilities three to ten times more likely to experience violent crime than their peers
And some statistics indicating up to seventy percent of disabled children are abused by their supposed caregivers

Jordan died under mysterious circumstances
There was speculation that he died due to his parents neglect, perhaps even murder
In the end they were cleared of wrongdoing, but I will always wonder
After his funeral, I started following news stories about disabled children murdered by their parents
Quickly noticing a disturbing pattern evident in the journalism and commentary
When a nondisabled child is murdered by their parents, there’s little empathy for the killers
The comment section will light up with passionate and creative fantasies about punishment, how the child was an innocent, perfect angel who didn’t deserve this most terrible of fates
Compare this to when a disabled child is murdered
Observe how quickly the conversation stops being centered around the victim and the parents wickedness
And instead focuses on “lack of services” and demands that “you need to walk in that parents shoes before you judge”

I know you don’t really want to know about my job
You’re only asking because it’s the socially appropriate thing to do
So that I ask you what your job is
And then we talk about something else
Like sports or art or important social justice issues
I wish that small talk weren’t so small
Because sometimes questions that are designed to get quick and simple answers provoke the enormous, daunting, and complicated
I know I’m dominating the conversation
I know I’m taking up too much space
I know you also likely have valid and important things to tell me
But many of the kids I talk about never get asked what they do
Because when they grow up, they are systematically denied jobs, an education, invitations to social events, and a space behind a microphone
Because Jordan is dead and can never tell you
So I’m not sorry
But I just can’t answer that question politely