Small Talk
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










