Taking A Break From Activism

I keep walking by this sign in my neighborhood that someone has hung in their window. It says, “What kind of activism are YOU doing?” Just like that, with the “you” in all caps. And each time I walk by it, I have a slightly different answer.

What kind of activism are YOU doing?

I’m doing disability advocacy. I’m fighting for justice for autistic people, especially because autistics are oppressed in so many ways.

Fighting for justice. This has been my go-to phrase for a while now. I started to really see myself as an advocate around April, when I launched a blog and wrote an op-ed and began sharing my opinions and experiences more publicly. Lately, though, I’ve been feeling skeptical of that first word. Fight. There’s lots to fight when it comes to disability, lots of people with mistaken, unkind, and even cruel intentions. But fighting isn’t the only thing. Progress also requires creation. Creating solutions, providing opportunities, building a shared understanding – all of that. As I consider this, I start to wonder if my fight-to-work ratio might be a little off, because although there’s lots of injustice in the world, I actually don’t face much ableism in my everyday life. I’m very lucky to have family and friends and multiple communities that accept and support me. I’ve never endured abuse, and the actions that I sometimes label “ableism” usually arise from misunderstandings or ignorance, rather than spite.

Besides, fighting is exhausting. I’m always in war mode, always ready to be angry. I get worked up over vividly imagined confrontations, many of which never actually take place. When there are small moments where I feel threatened – someone using functioning labels or euphemisms for disability, or oversimplifying mental illness – I have so much trouble letting it go. I fret about the interaction for days, even weeks, after. I’m tense most of the time, to the point where I have difficulty concentrating on the work that I’m doing.

Maybe I can take a break from fighting. Maybe it’s time to redirect my energy. After a certain point, destruction feels like a cop-out. It’s definitely easier than creation.

What kind of activism are YOU doing?

I’m doing disability advocacy. I’m working towards justice for autistic people, especially because autistics are oppressed in so many ways.

Oppression. A word that’s become so familiar to me, that slips into my everyday speech sometimes without conscious thought. And, at the same time, an observation: I have trouble coming up with any particular moment where I myself have been oppressed. Yes, I’ve been told to act less autistically, and yes, those instructions have impacted me in a negative and long-lasting way, but they were given by adults who cared a great deal about me. My parents, for example, taught me and sometimes required me to make eye contact. I’ve reinterpreted this as an unfair expectation, but my ability to make eye contact when I need to is a valuable one, and my parents weren’t infringing on my rights or trying to hurt me. They were just being parents.

As for other examples of oppression in my own life? I can’t think of specifics. I’ve had plenty of awful interactions, especially with doctors, who treated me with varying combinations of disrespect, incompetence, carelessness, and disdain. I’ve definitely suffered from medical professionals’ ignorance about certain conditions. It’s unfortunate. It’s painful. It’s caused me suffering, but that doesn’t make it oppression.

This is where the social model falls short, particularly when it comes to mental illness. Yes, our society could and should be a lot more inclusive of disabled people. But there are disabilities and illnesses that simply aren’t caused by society. As I explained in another post, major depressive disorder is often, if not always, endogenous. When I’m sick, I’m not depressed about anything. I’m just plain depressed, and no amount of positive affirmations or anti-ableism is going to change that. A lot of really awful and difficult and painful things have happened in my life, but it’s not because I’ve been oppressed, and there isn’t a person or system to blame.

Another important piece: Other autistic and disabled people are oppressed and are suffering significantly more than I am. I can’t help but wonder if it’s really “just” for me to be fretting about identity-first language and agonizing over functioning labels when autistic lives are on the line. To be totally honest, my advocacy had become self-obsessed. I learned to see everything in relation to myself, and I lost a sense of scale. Some autistics are oppressed, but I’m not. And that distinction makes a world of difference.

What kind of activism are YOU doing?

I’m doing disability advocacy. I’m working towards justice for autistic people who experience oppression. And I’m trying to do things for other autistics who are struggling, too.

Justice. As the summer goes by and I spend more and more time alone with my thoughts, I am forced to grapple with an uncomfortable idea: I’ve used justice as an excuse for unkindness. Not always, not constantly – but still. I’ve bitten off other people’s heads when they’ve said something that bothered me, and usually, those were small things. In one class, another student mentioned the phrase “autism and other mental illnesses,” and immediately, I pounced: “Autism is not a mental illness!”

I could tell afterwards that I’d been too harsh. In fact, they were making a point I agreed with: that autism has advantages, that it’s not something we should assume must be “fixed” or “cured.” Why had I focused on those five words? Couldn’t I have corrected them in a gentler way, or not corrected them at all? No, I told myself. I certainly couldn’t have. The idea of autism being a mental illness was such a harmful notion, one that led to cure rhetoric and attempted cures and even eugenics. I had a duty to say something, no matter how bluntly or hurtfully.

But it kind of did matter. I could think of plenty of times where other people had done the same thing to me, correcting a slip of the tongue or a mistaken word with such intense anger. And I felt awful. Then there had been other times where I had made similar mistakes and people corrected me gently. Or they didn’t even correct me – rather, they explained an alternative perspective or shared their perception of my words. Those were the beginnings of kind conversations. And isn’t kindness essential to justice?

What kind of activism are YOU doing?

I’m doing disability advocacy. I’m working towards justice for autistic people, and I want to act with kindness. I’ve never regretted treating someone kindly.

That felt better. Justice and kindness are both such positively charged words, but there was something more immediately comfortable about kindness. Probably, I reasoned, because kindness is more concrete. Justice is complicated, and it suggests understanding of some universal scheme that accounts for behavior and intentions and then doles out fates accordingly. The abstract nature of justice let me give up responsibility for my actions. Kindness, in contrast, means paying attention to my surroundings. It means seeing the good in others. It means acting thoughtfully and focusing on what I can control, rather than constantly trying to orient my every decision within an entire worldview.

Have I left myself room to change my mind? I try to approach the world rationally. I believe in science. I know the human mind is fallible. I understand the importance of examining alternative hypotheses, countering bias, and prioritizing logic over emotion. 

Why, then, did I find myself dismissing sources of information with which I disagreed? Why was I so hypersensitive to specific phrases, like “person with autism,” to the point where I stopped listening to someone talk as soon as they uttered those words? Why had I interpreted “neurodiversity,” a word referring to the diversity of thinking, as an excuse for cognitive rigidity and single-mindedness?

What kind of activism are YOU doing?

Maybe what I’m doing isn’t always about justice. Maybe I make mistakes in what I do and how I think. Maybe people can have opposite opinions without necessarily being wrong. Maybe this is more complicated than good vs. evil. And maybe that’s okay.

Another thing that’s okay, now that I think about it: not being an activist. From a disability-oriented perspective, this makes perfect sense. As someone once told me, “The problem with disability advocacy is that we’re disabled.” Many disabled people, by virtue of being disabled, simply don’t have the spoons (aka bandwidth) to do anything other than get through the day. Expecting such people to be activists seems unrealistic, unfair, and unproductive. The same is true of many other people for different reasons. Not everyone has the time or education or money or energy to become experts in critical theory, master the rhetoric of intersectionality, and take down systems of oppression.

And even when activism is a possibility for someone, it isn’t the only way to do good in the world. When I was at my sickest and spending months in hospitals, I didn’t need my doctors to be advocates; I needed them to be good doctors. I didn’t need nurses to be well-versed in disability theory; I needed them to be well-versed in pharmacology. There are hundreds of people who have helped me at various points in my life who weren’t advocates, who knew nothing about autism, and who made an enormous positive impact anyway.

When I think about, I realize that “activism” might not be the best label for how I’m spending my time these days. At the start of the summer, I noticed that there were very few resources online for autistic college students, which is why I decided to create my own. I ended up collaborating with some wonderful college-age humans, doing a ridiculous amount of research, and writing tons of material, which will soon be posted here. Being autistic is really hard, and the transition to college is tough on everyone. If the resource I made helps even one autistic student and makes their life a little better, I’ll have achieved my goal. 

What kind of activism are YOU doing?

Right now, I’m focused on kindness.

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4 replies

  1. You are an inspiring writer. The cadence and progression in this piece pair perfectly with your messaging. Loved it!

    Liked by 1 person

  2. Good article, alot of meat on the bones that I liked very much. The general malaise and insufferable quality that you stated is well known to me from co-workers that are a carbon copy of how you described yourself previously. That intolerable state of being with no grace is very tiring not only on others but on that person in the iron fist of those patterns.

    Very glad to have found this article on Quillette (sp?)

    Best wishes to you



  1. Everyday Feminism Is Comedy Gold – AUTISTIC ON FIRE

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