I keep hearing this refrain from disabled people all the time: “[Insert disability] doesn’t define me!” And the related, “I don’t want to be labeled!” I get it. If you’ve lost part of your body or the use of it, being thought of by people as nothing more than a person in a wheelchair or “the blind guy” or “that deaf girl” is horrible and limiting.
Clearly there is more to a person than a visible difference. That blind girl has talents, interests, and interpersonal relationships and that deaf guy has a job and a family. Being known or recognized by a superficial difference is unfair. They are not their disability. It doesn’t bear on who they are as an individual and has little to do with their personality.
But being on the autism spectrum is demonstrably different.
What I’ve learned as a person who only just “discovered” being disabled, even though my personal history is proof enough, is that I’ve been carrying labels around with me my entire life and I’ve got little to no control over this. Most of those descriptive labels are included in the word collage above, but a few are missing:
Notice anything about those words? Not only are they negative, but several are contradictory. For instance, some people conclude I’m a super-smart nerd and others talk to me like I’m a 5-year-old. It never made sense to me before, but then I figured out that context is everything. If I’m in my element, which is talking about subjects I love, I come off as erudite and insightful. When I’m out of my element, say in a casual social scene, I’m at a loss and my “retarded-ness” comes to the fore. I stay on the edges creeping out the people just trying to have a nice evening. When I do speak it’s by blurting lame shit, stuttering, and bringing up the very things I know I shouldn’t bring up. Like politics, religion, and book-learnin’.
The hard truth is that we ultimately have no control over what other people are going label us. And they will label us. All the politically correct lectures will do no good. Garbage humans are always going to be cruel and define us by our differences; especially the superficial, hyper-social hierarchy climbers. All they see is someone insignificant because we don’t play the same game or have a “killer instinct.”
And no matter how hard I try to pretend normalcy or whether I disclose my condition or not, eventually people will find me off-putting or simply hard to define. When your presentation and personality are difficult to place within a known social group or “type,” it makes people deeply uneasy and they won’t understand why. They begin to talk to one another about me or suspect me of I-don’t-know-what. People become stand-offish and wary, but increase their scrutiny of me. This makes me nervous and I seem even more strange. Things fall apart.
Negative feedback loops are a bitch.
I reside in the Uncanny Valley, but not because of how I look – because of how I behave. It’s the Uncanny Valley of Social Interaction. Unless you are on the spectrum and are therefore able to observe social skills, presentation, and language from an outsider’s perspective, you can’t see how proscribed and deeply embedded are the social skills of neurotypicals. Most of the time they can’t even put their finger on exactly what it is about me that disturbs them so much, but it is what it is.
And there are consequences.
By self-labeling as someone on the spectrum, at least they know what makes me seem odd. Of course, there are always the people who will discriminate or talk down to anyone on any part of the spectrum, but those assholes are going to be problematic sooner or later no matter what. I would rather people who are in my day-to-day life know why I’m invisibly different. It’s the speculating and confusion that makes people the most uneasy.
The unexplainable is disturbing.
Another reason I don’t mind being defined by my differences is that Asperger’s does determine most things about me. While a person isn’t their inability to walk or hear or see, everyone is in a very practical sense who their brains are, and mine is autistic. We are our neurology. Everything from my interests and personality traits to my life history and physical problems are encompassed by my diagnosis. That’s why person-first language isn’t important to me. “Autistic person” or “person with autism” adds up to the same treatment at the end of the day. Whether I want it to be true or not, people are going to define me by my Aspien traits – knowingly or unknowingly. And if they don’t know, they’ll come to wildly incorrect conclusions on their own.
Look at it this way: No one is up-in-arms about positive labels. No one is chanting, “I will not be defined by my awesome career as a rich CEO.” Or, “Being a mom has nothing to with who I am.” Or, “I don’t want to be labeled as an amazing lover.” These are the first things people say about themselves when they meet a new person. (Maybe not that last one.) The furor over “being labeled” or “defined by” something only applies to negative labels that people are ashamed of.
I’ve been embarrassed and embarrassing for my entire life – I’m not going to be ashamed anymore of who I am because of my unique mind and social presentation. We need to work on changing how people view the difference; not what words people use to describe it.
Here’s an excerpt from American Nerd by Benjamin Nugent that makes this point better than I can:
There’s a scene in Mark Haddon’s novel The Curious Incident of the Dog at Night-time, narrated by a teenager who could be described as having Asperger’s Syndrome . . . He’s on a school bus full of children on the way to the special school he attends, children who would have once been called “mentally handicapped,” “retarded,” or “mentally ill,” but who are now referred to as having “special needs.” The kids from the normal school run alongside the bus and scream “Special needs! Special needs!” The point is that stigma doesn’t accrue only to people who are given inherently stigmatic labels. Any label becomes stigmatic when it means you go to a different school or turn from a central hallway into the room set aside for children who have needs beyond or different from what other children have.
Now I’ve noticed in the entertainment and social media that referring to someone as “on the spectrum” or “having Asperger’s” is the new “retarded.” On one Netflix show, Big Mouth created by Nick Kroll and Andrew Goldberg, cartoon pubescent Andrew is looking for a seat on the bus and has this little exchange with his imaginary goad called the Hormone Monster:
Hormone Monster: Don't sit with the kid with the rolly backpack.
He can't read social cues.
Caleb (to Andrew): Hi, you're looking at me.
How tall are you? There's a monster next to you.
Hormone Monster: Eh, what's up, Caleb? Oh, yeah, yeah, yeah.
I don’t think it’s meant to be blatantly insulting, and the other kids are being superficially nice to Caleb, but the implication that he’s unacceptable even as a seat-mate on the bus is still heartbreaking. However, I want to point out that Andrew is the only one who can see the Hormone Monster except for Caleb. Asperger’s always invites both insults and a strange admiration from neurotypicals. They reject us out of hand, but believe we have magical abilities and powers of perception. Caleb makes a few other appearances in subsequent episodes and he always comes out with the most astute and truthful (although blunt) observations.
Which is often true of us. So at least we’ve got that.