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Making Invisible Struggle Visible -- Neuronormativity, Ableism as the Air we Breathe

And it’s Day 9(ish) of my 30-day-blogging challenge! By “ish” I mean that I “cheated”. And by “cheated” I mean that I made an accommodation for myself by choosing to forego writing a post yesterday (April 9th) and am (planning on!) writing on yesterday’s chosen topic today (April 10th). [Spoiler alert: I didn’t. I deviated. Some other things needed to be said.] It remains to be seen whether I will “catch up” and write two posts today, or some date in the future, or if I will simply let this challenge run into May… or be a 29-days-of-blogging challenge. All are possible and all would be Okay.

Why bother go into all that inane detail about my blogging process? Because I’m still trying to model something I talked about in the last post (go read that one!) and remain true to my principle of exposing my process where I can so that you all can see what it really looks like, with no filters or social media polish. My goal is not to impress you with my brilliance or wit or, well, with anything. My goal is not to impress you at all. My goal, if anything, is to show you what it is to be me, how it is to think like me, and give you the opportunity to find the places in yourself where you can be a little more you. In a nutshell. I have other goals, too, I suppose, but this post wasn’t supposed to get this philosophical this quickly.

Yesterday I chose to preserve spoons and spend the vast majority of the day resting, and I did have some vaccine response to my COVID-19 shot from the day before (and zero regrets--I anticipated and prepared for a vaccine response). Today I have still been mostly resting, although my symptoms today were more of a “knock-on” effect of what happens to an autistic brain which is perpetually on the brink of burnout (and has some other comorbid neurological challenges) when it gets pushed to its limit by a long drive, disrupted routine, and then (comparatively minor) immune system challenge of a vaccine.

Again, I’m bothering to go into some detail here because I think it’s important to parse these things and recognize the way it could all be unfairly summarized. When you deal with a range of health challenges and neurological differences, everything you do has the potential to take you out of commission for a while and there’s rarely the opportunity (or need, or desire, or spoons) to explain the exact reasons why. It can be frustrating to have incorrect assumptions made and be too tired to correct them and to eventually have those assumptions add up to an unfair picture with potentially harmful consequences.

And all of this is just a day in the life, regular occurrence for many folks with chronic illness, invisible illness or disability, or autistic folks. It’s Saturday today, but I’m already thinking ahead to Monday and the week I have planned at work (which was already slated to be spoon-intensive due to full-day video meetings all week--which is supposed to be “fun!”...) and imagining what accommodations I might need to ask for or make for myself, and if/how I will explain or excuse them. It’s a never-ending and exhausting game of trying to avoid seeming like “not a team player” or like I am faking or exaggerating an illness, and contemplating when/if I ever do communicate the extent of the conditions I face, how I will likely be met with a mixture of doubt and “why didn’t you say so sooner?” The parallels to what I’ve faced when revealing sexual assaults in the past are not lost on me.

It’s easy to see why so many times the easiest choice is just to forego the accommodation--and get sicker. Spend more spoons that I don’t have. (Or keep quiet about the assault--as we know many survivors do.) And what suffers as a result? Health, of course, but also relationships, work quality, self-care, and really everything else. Which can build resentment over time, if one is conscious of what’s going on.

And that resentment in the face of a world which seems (because it is) set up to make life hard specifically for people like you is so exquisitely described in an article by Bárbara Herrán Salcedo about the autistic experience, resentment, and how neuronormativity is to blame (not neurotypicals). Go read that piece. Seriously. It’s the only link I’ve included below because it’s that important. In fact, when I found it and read it today, it impacted my thinking for the day so strongly that I’ve put off the topic I was going to write about so that I could weave my current experience into this discussion.

Under the assumption of neuronormativity, it might seem irrational to object to having my camera on for several hours of meetings because I had an immunization shot four days prior, or because I will have to be in meetings for the next four days also, or just because it will make me sick. But I am willing to bet that for autistics reading this, even if you might not have an identical autistic experience to mine, you can probably at least empathize with this at a level where if it were your teammate, you wouldn’t hold it against them. You wouldn’t even think to. It makes perfect sense. Being on camera for hours is exhausting. Yet all of the language around these virtual events is rife with the ableism of not-so-subtle shaming people to remember: Cameras on! No one likes presenting to a blank screen! :)

But here’s the thing: there’s no way that screen is going to be blank. There will be hundreds of faces. A few cameras being off won’t affect a thing. And I can guarantee you that there will be some cameras off. And probably a good number of those folks aren’t autistic, aren’t overthinking this, aren’t going to have any negative consequences. (Some may be, or may.) But for this autistic person reading those instructions, it’s yet another opportunity to feel like someone else’s convenience/preference/comfort matters more than my health and well-being. And it’s yet another chance to weigh whether I risk being “caught”, risk being put in a position of having to make an awkward and unconvincing excuse, risk having it noticed that over time, I seem to be “not so engaged” and on and on. This is what I mean when I say those assumptions add up.

And through all this I know that even if I were to disclose and be fully transparent about my needs, the level of understanding of autism in the general population (and therefore likely in my workplace) is so poor that I would almost certainly still be met with ableism and misunderstanding and pressure to engage in behavior that would harm my health--but now I would be under greater scrutiny for further possible “infractions”.

I’m not catastrophizing--I’ve experienced this. Not with disclosure of autism, no, but with disclosure of other neurological conditions I face. Just as a small and comparatively inconsequential example, I once had to withdraw from a regular community gathering because my symptoms from a head injury were being exacerbated by the format of the gathering (long, weekly phone calls from which it wasn’t really acceptable to take breaks, leave early, or even just “check out” periodically but which required sustained attention for the full two hours -- is this comfortable even for neurotypicals??). I knew that leaving this regular community gathering would likely mean having to leave the community altogether, which I very much did not want to do, but the leader did not seem willing or able to accommodate my needs. When I made the (incredibly difficult) decision to inform the others that I would be withdrawing from the weekly meeting (and gave my reasons, reminding them of the head injury), after weeks of asking for specific accommodations to no avail, I was immediately met with a cluelessly perky response pressuring me to “just keep trying!” as if I was experiencing emotional resistance instead of medical consequences. The implication being, of course, that if I stuck to my boundary to preserve my health, that I “wasn’t trying”.

This rant/ramble of a post has gone long enough, perhaps not even fully arriving at a point, but I want to at least try to underscore what I’m driving at here. When you aren’t trained to recognize “invisible” disabilities, neurodivergence, and anything else that might cause someone’s experience of an activity you find somewhere between mildly inconvenient and truly enjoyable to be… downright hellish… you are very likely to assume that person’s experience is similar to yours. And therefore, if they are complaining, it is at worst over a mild inconvenience, and this is going to impact how you view that person (and any of their future complaints). This is ableism. This is neuronormativity. This form of bias and discrimination is so common as to often be as invisible as these supposed “invisible” conditions are. But none of it is invisible if you know what to look for, and you look for it. It’s blatant.

I’ll leave you with this food for thought: while writing this post, I took breaks to watch the videos for the diversity & inclusion training that my workplace sent out for all of us to complete which covers unconscious bias. I was actually impressed with how updated and actionable it seemed, and I thought how it might actually make a difference in my workplace. But I noticed that the training only talked about bias related to certain axes of marginalization--it didn’t even touch disability or neurodivergence. I skimmed through the other trainings offered to see if there was one I could request my workplace make required or even just recommended. I looked through the entire training platform, and there wasn’t even a single “micro” lesson on inclusivity related to disability or neurodivergence.

How can I expect my colleagues to understand the nuances of neurodiversity when the external diversity training company we hired doesn’t even seem to be aware that neurodiversity is a thing?

Sometimes it feels like we are many, many steps away from being able to collectively recognize, call out, and reduce harm done due to neuronormativity and ableism. I did send feedback to that diversity training company. And I am here, writing about it, amplifying the voice of another autistic writer, and trying to make baby steps towards a truly inclusive world.

Important Piece on Neuronormativity (Please read!)

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