Making New Year’s Resolutions is usually a tiresome cliché, but this year I have some anyway. Specifically, I have three New Year’s Resolutions that relate to how I want to live in 2019 as a disabled person.
Resolution 1: I resolve to use less disability jargon, and explain it when I do use it.
Disability culture and politics often seems fueled and even defined by unique and highly specialized words. For example: ableism, inspiration porn, institutional bias, intersectionality, eugenics, erasure, emotional labor, or identity first vs. person first language. All of these terms serve useful purposes, giving voice to experiences and ideas that disabled people share but often have a hard time describing to others. Other groups and cultures have their own “insider” language too, but the disability community in particular seems to rely on words and phrases not only to express our ideas about disability, but to actually shape them.
Unfortunately, this can make disability culture and communication seem intimidating and closed to outsiders and newcomers. That includes many people who actually have disabilities but don’t organize their lives and identities around disability culture and activism. And this can lead not only to an exclusiveness that’s the opposite of our community’s supposed value of inclusion, but also a remoteness that makes important ideas about disability literally inaccessible.
That’s why in the new year I will try to use more familiar, accessible language to explain disability concepts and describe disability experiences. Some disability terms are important in themselves, and can’t be improved on, like “ableism.” But when I use them I will at least try to take the time to explain them. I’m also starting a year-long blog series on disability terminology, called The Disability Alphabet.
Resolution 2: I resolve to reevaluate my relationship with social media.
Don’t get the wrong idea. I’m not going to delete my Facebook account or stop tweeting. I’m not going to stop watching YouTube videos. And I’m not going to start preaching the virtues of “limiting my screen time.”
I’m old enough to remember when it was common for “smart” people to boast that they didn’t watch TV, or even own a TV set. It feels like there’s a trend growing in that sort of direction with social media. It’s becoming fashionable to abstain, and subtly look down on people who use social media. The thing is, for a long time TV really was mostly crap. And at the moment, social media seems to be full of crap, too. But Social media platforms are also vital links and communication tools, especially for disabled people. And like TV, we can choose what to pay attention to and what to ignore.
So what do I mean by “reevaluating” how I use social media?
First of all, I won’t be so quick to dismiss reports about what these services do behind the scenes. And I want to be more aware of how the algorithms that determine what we see, hear, and read can affect how we think.
I also want to reach beyond my own “friend” and “follow” lists to people and publications that approach disability differently than I do. I want to look for interesting disabled people who are not activists, who are just starting out on their journey, or who are still grappling with what, if anything, their disabilities mean to them. I’ll never support disability approaches I completely disagree with … like sheltered workshops and segregated “residential’ programs. And I don’t think I’ll ever like gooey “inspiration porn.” But I will try harder to understand where people are coming from and why they may talk about disability with different priorities, perspectives, and tastes than I do.
Resolution 3: I resolve to speak to more people about disability issues.
Sometimes it seems like I have two personalities when it comes to talking about disability. Online, I’m an extrovert. In person, I’m a shy introvert. I can be nervous, almost embarrassed to talk in person about disability issues even with people I know and love very well. I want to be bolder, more willing to talk to people in my “real” life about disability experiences and issues.
As I’ve already indicated, I also want to connect more with people who are disabled, but aren’t engaged very much in disability issues, culture, or activism … people who don’t already tweet, comment, and blog every day about disability. I’m talking about proactively bringing up political and cultural issues about disability that I think are important to discuss, with people outside the safe and comfortable “disability bubble” I tend to inhabit.
A good test for this will be my 30th college reunion this summer. Will I be able to explain my disability writing, nonprofit work, and activism in a way my old classmates will understand? Will I be able to do it briefly, simply, without rambling or trying to explain too much?
By the way, when I say I want to talk to more people about disability, I don’t mean being more generous with intrusive questions from strangers. While I have a pretty high tolerance for answering questions like, “What’s the matter with you?” and “How do you drive?”, I don’t plan on opening myself up more to strangers’ morbid curiosity. That’s one kind of emotional labor I don’t need more of in 2019. (Emotional labor is the kind of social interaction work that over time takes an emotional toll. See? I explained it!)
What are your resolutions for 2019? Or, do you stay away from resolutions entirely? Feel free to share and comment below!
