Small Talk
Please donāt 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
āSo what do you do?ā comes the polite question āI work with autistic childrenā I say Sometimes itās āautistic childrenā Sometimes itās āchildren with autismā The difference is meaningful to me and to others but is usually an irrelevant distinction to the person Iām saying it to Iāve been in this field for a while now, and Iāve 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 itās particularly rude, in fact itās supposed to be a compliment But when I hear it, my first thought is how desperately I want to punch the speakerās mouth though maybe the lecture I launch into instead is worse
āOh, I work with autistic childrenā I say āWow,ā people reply āThat must be so hard! I could never do that Youāre a really amazing person I bet you already have your golden ticket straight to heavenā
I hate this idea that it ātakes a special person to work with special peopleā Itās a self fulfilling prophesy And itās a deadly one Because the unspoken idea here is that people with disabilities donāt deserve interaction, patience or decency from ānormal peopleā When you say āI could never do that,ā I donāt 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 āI work with autistic kidsā you know my job But you donāt know anything about what I do When I say āI work with autistic kidsā I can mean a lot of things Maybe Iām the bestest teacher person ever, Annie Sullivan reincarnated Maybe all it means is that I play on my smart phone while ignoring the kid Iām 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 shouldnāt 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, itās impossible to remember them all There is another list, one I keep in my mind, one I wish didnāt exist Things my clientsā 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 āaversiveā 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 hadnāt tried I showed this teacher a different program I found She wouldnāt even look at it āHe just needs a different consequenceā
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 whatās wrong as she sped off āTheyāre going to be like this forever,ā she started, not caring the twins could hear her āTheyāre going to be like this forever and thereās nothing I can do about it. Iām going to put them in a group home and fucking kill myselfā
A different teacher thinks Iām 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 āYou know they just think of us as moving furnitureā
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 āI know he left because of *him*ā
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 wouldnāt 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 āI didnāt care if her mom was out in the car crying,ā she said āI was going to make that little bitch do itā
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 āretardā and āJerryās kidā 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 whatās up Pause āJordan diedā
When I tell people about Jordan, their responses are also predictable The one I hate to hear is that āhe is in a better place nowā People tell me this to be nice To help me get over it, to realize itās actually better this way I donāt believe in god or an afterlife And even if I did, this sentiment only provokes anger in me Jordan didnāt belong in an abusive home But at fifteen, he also didnāt 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 donāt say āsheās in a better place nowā They say, āThatās so terrible and sadā 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 wasnāt 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 personās politics from how they answer this simple question, āwhat do you think of disabled kids?ā The answer I hear a disappointing amount of times is āoh, Iāve never really thought about itā 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, itās upwards of ninety percent? You probably know something about police brutality When you get home, Google āblack and autisticā and see what comes up Our culture obsesses over mental illness and violence When we talk about gun control, very often itās framed as simply ākeeping guns away from those crazy peopleā Though if you look at the data Being classified as mentally ill puts you at extraordinary risk for violence from so called ānormalā 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, thereās 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 didnāt 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 ālack of servicesā and demands that āyou need to walk in that parents shoes before you judgeā
I know you donāt really want to know about my job Youāre only asking because itās 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 werenāt so small Because sometimes questions that are designed to get quick and simple answers provoke the enormous, daunting, and complicated I know Iām dominating the conversation I know Iām 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 Iām not sorry But I just canāt answer that question politely















