Disability, privilege, tone-policing and mastodon
Fuck it; six hours to go until 2023, and I need to get one last blog post out of my system.
Fuck it because this one has weighed on me for a long time. It's been eating at me in that lovely intrusive manner that makes me so good at solving bugs.
"Just let it go," they say, so I hope I'll be able to let this one goâlike fireworks, rising quickly, shining bright, and falling far, far away where it will not bug me anymore.
2022
2022 was the year I was finally prescribed ADHD medication and the year I found out I was autistic. My entire life was flipped upside downâI suddenly had words to explain things that happened to me; even better, I had all the conversations and experiences and books and advice of people using the #ActuallyAutistic hashtag on Twitter (and the now nascent community on mastodon).
Disclaimer: what follows is my own experience, and I am not speaking for any autistic person besides myself (if I were to speculate wildly, I think the number of autistic people who would want to speak for anybody besides themselves is pretty low đ¤Ł)
2022 was also the year I left my job of 10 years, feeling gaslighted, hurt, and unable to piece together how I went from being the most prolific and experienced contributor to having a tiny stapler in the basement, getting chastised if I dared staple two sheets of paper together (I love a good staplingâwhen the pages align perfectly and the thickness is just so).
Leaving my job was the second best thing that could happen after that whole ADHD and autism business (one definitely led to the other). It made me realize that under the ashes of all these years of burn-out, under all the unnecessary JIRA tickets and shoddy meeting notes and lack of strategy, under the don-quichotesque efforts to rube-Goldberg wtf-are-we-doing mountains of legacy software into shipping products, there was a mnl that loved writing software, loved building good products, loved thinking hard about things and writing about them and sharing with others.
Getting back to blogging
I tried to channel all that self-discovery, all that "oh god, I'm 40, shit is getting serious" energy into a new blog. I got better at editing and my writing more conciseâI hoped that by being punchy, direct, and clear, people would understand what I was trying to say. I wanted to share things, uncomfortable things too.
After all, I didn't end up doing so badâwhat with my career in tech, a green card, a freshly bought house, and a PS5; maybe I could spend some of that privilege capital and make someone's life a little bit easier, putting myself out there 2000 words at a time.
With my newly found autistic confidence, after reading a comment on Hacker News about how autistic people apparently cannot admit when they are wrong, I set out to write a short article about what might have happened in those situations since I experienced them myself. I pride myself on second-guessing every one of my choices and only saying things I can back up with facts, so why were people telling me I couldn't admit when I was wrong?
I spent more effort on this 1200-word article than any other piece I wrote: it took me two months from start to finish; I ended up paying a professional editor not just for editing but for a few hours of writing coaching in general. Nothing could go wrong! I didn't call out anybody; I didn't make any judgments; I didn't ask for anythingâI just wrote down what things looked like from my perspective. I pressed publish and proudly posted it on HN, where it made it to the front page. I was a cocky little shit in my teenage years, a veteran of the USENET flamewars of the ninetiesâwhat could happen to me, being all vulnerable on HN?
The irony of tone policing autistic people
The first, most upvoted comment, posted a mere minutes after the article went up, was full of indignation about the arrogance and self-centeredness of the article, proceeding to caution me to read books about history, psychology, politics, which the author confidently posited I "clearly" knew nothing about.
Back in July, I didn't understand why someone would say something like that. What was arrogant about writing about my experience? I had been so careful; surely, I wasn't making any judgment about anybody else. How could this person, so eager to call out arrogance, tell a perfect stranger, a 1200-word-is-all-i-know-about-you stranger, that they "clearly" knew nothing about psychology or history or anything, really?
I candidly took it all in (this may come as a shock to most of you, but I actually don't know very much at all đ¤Ą), chastised myself for not having been clear enough (I'll do better next time!), and realized that all of this nonsense hit me much harder than expected. But let go, I can't, and there would be more amongst those 400+ comments of what I would later call "the irony of tone policing autistic people."
Tone policing means rejecting lived experiences because of some perceived breach of decorum (you are too rude! you sound arrogant! why are you attacking me?). The irony is to pretend that said tone policing is necessary because of the lack of empathy of autistic people, of their shortcomings when communicating (more so: educational! an opportunity! a generous gift from a person with social skills!) when in fact the miscommunication goes both ways. Tone-policing an autistic person, often under the umbrella of inclusion, shows that the tone-policer has made no effort to empathize and listen.
If somebody is so skilled at communication; if they can so quickly identify the shortcomings of my education; if they are so great at empathyâwhy are they unable to not read between the lines, to not frame what I am saying through the lens of their projections; why can't they put themselves in my shoes and pretend that my words mean what I intend them to mean (and hopefully, match their definition in the dictionary).
Privilege and disability
A few months after that first article, I found myself involved in a similar incidentâthis time face-to-face and in private, in the context of a technology meetup. It had been pointed out that there was a problem with my communication on zoom (who reported it? what did I do exactly? I wasn't told). I decided to write a short forum post explaining what my disability was and proposing to tell me to move on if I went on too long. Being so blunt is uncomfortable for non-autistic people but reasonably easy to get used to (my wife realized I had zero issues being told "this is boring, please stop" when rambling on about category theory or the mechanics of parrying in Bloodborne, but wouldn't pick up on subtle cues of disinterest). Certainly, it was very uncomfortable for me to write such a post. I asked a person that positioned themselves as championing neurodiversity and inclusion in the community for feedback before posting it publicly.
What I thought was a reasonable ask (in an environment that proclaims not to tolerate ableism) was met with the familiar refrain of me sounding entitled and arrogant and that it wasn't up to the community to accommodate me but for me to adapt to the community. An attempt to word the forum post differently elicited the same response. I was asked if I could maybe provide a list of the things that I had tried so that the person could judge how much of an effort I had made. Apparently, I was selling myself short; they knew I could do better and should just try harder, and asked if I had tried to google for resources on learning better social skills.
I was already exhausted at this point and decided to leave the meetup entirely. I didn't have the words or the strength to explain my feelings. I don't think neurodiversity and inclusion won that day.
As things go, I couldn't stop thinking about why they would consider me entitled when I was trying so hard to figure out a solution, short of leaving. The irony is that no one would tell me when I was not communicating appropriately and instead expect me to pick up on it. But since I couldn't, I had to ask explicitlyâif I knew how I would communicate appropriately in the first place. I didn't know why someone that knew nothing about my life, about the hardships I faced due to my disability, judging my efforts and potential like some preschool teacher, wasn't. I didn't understand how all they could suggest was to google how to learn better social skillsâas if that thought had never crossed my mind in the 30 years I've been on the internet.
It was only when I watched this video a few weeks ago that I could put words to it: Deconstructing Privilege. I am disabled and thus marginalized in our ableist society. Getting offended by perceived arrogance instead of listening is called tone policing and an act of privilege. Because I am a white cis dude with a reasonably healthy body in technology, I never assumed I would face discrimination in my work or my "scene," but that it was for me to take a step back and listen (funny how privilege and ableism kept me from realizing I had maybe less privilege and ability than I realized.)
But autism is a disability: what makes me autistic (what makes "me" me) also makes my life harder. It made it hard to keep a job; it still makes it hard to advance in my career; it made me do drugs to numb my senses; it made me drop out of university; it made me a constant target for police in Germany; it caused severe burnout and other mental health issues, it makes it hard to be taken seriously by doctors. I am not using hyperbole when I say that it almost killed me, and it would have if I hadn't had a supportive family and some tech-bro-whiz credibility (privilege, again).
Autism makes every attempt at communication fraught with danger. The better you get at navigating the abled world (something autistic people call "masking"âbehaving in such a way that non-autistic people will think you merely quirky, not creepy, arrogant, or dumb), the more people will hold the slightest misstep against you ("you know better"). The more you open up, the more people assume you just want to act like a jerk and not have to shoulder the consequences.
It is also a misunderstood disability. No one would think of chastising a blind person for bumping into people, telling them that it wasn't people's responsibility to step out of their way, or asking them if they had maybe tried just to google how to see better. Yet that is the starting point of most discussions about autism, with society shaped as it is by a reductive view of neurodivergence (a view that is thankfully slowly being eroded due to the efforts of decades of activism that I now get to benefit from).
New year's eve 2023
The reason I am writing this post today is that I got into a rumination loop about these experiences while on a beautiful walk on Cape Cod, as I do ever so often.
When I came back home and opened social media like the lemming I am, I saw A, an autistic person I follow, open up and tell their experience of alienation and not belonging due to autism in response to another person's experience of alienation due to anti-black racism (A is latino). Not only is relating by experience often a way for autistic people to show sincere support and empathy (and not as is often presumed to draw attention to themselves or signal some virtue, concepts that are pretty alien to us), but the post was inobtrusive and subtle (in my opinion).
They were "called out" by B (a white male, AFAICT) in a reply; B pointing out how we should not center ourselves when privileged but listen. When A asked for clarification about the meaning of the reply, since he wasn't trying to center himself, but instead relate through his own experiences of autism, he got a snarky and paternalizing response ("I applaud you for your self-awareness," as if A was a child that knew it was doing something naughty).
I was a bit upset after my walk and decided to point out why the reply was hurtful. B later explained that the snark was due to A asking for clarification, but stood by their initial callout ("when A told me how to communicate, I felt irritated â especially since A knew he was making a mistake"). For them, the tone policing was justified by the assumption that they not only knew, but could judge A's intent (instead of listening to what A was saying). The snark was justified because they felt irritated by someone commenting on their tone (when in fact, A was asking for clarification).
(While it is not my intent to call out anybody here, I am leaving enough detail that people can recognize themselves if they so desire.)
The irony of feeling entitled to swoop in to publicly and condescendingly tone-police someone relating their deeply painful experience of marginalization (and not reexamining the situation after it was pointed out that their toots were hurtful), all under the pretense of being an ally, is jarring to me. Even if A did commit a blatant faux-pas, I can think of much more productive alternatives to approach the subject, especially when the faux-pas is about them opening up about their disability and alienation.
This interaction would have deeply hurt me if I had been A (a later callout that assumed that A was white to start with and used much stronger language was even worse). It would probably weigh on me for months and keep me from enjoying social media and the autistic community that has been the bedrock of my transformation over the last year. That is the cost of tone-policing and not listening to people's lived experiences of being marginalizedâpeople get harmed further. No one wins except a white savior savoring their righteous anger.
2023
As I observed this interaction, I knew I was going to be able to close the chapter and finally process my own experiences with tone-policing this year and shed some light on the tension I am experiencing between having significant privilege as a white male in tech while dealing with the unique flavor of disability that autism presents.