On my least favourite part of myself, or is it my favourite?
Balancing an autistic sense of justice with a really f'd up, unethical world.
I am not good at staying in group settings for a long period of time. I always hit this point with people where they are Done With My Shit. I am physically incapable of making things easy, and speaking out about injustice is like a compulsion I just cannot stop. My brain leaps to see a better way before I can even articulate how that way works. My brain also cannot identify correctly whether someone is genuinely agreeing with me, or nodding to be “polite”. I see facts and information at face value first, and I’m that guy who knows random things from random places but not anywhere near enough to be an expert in most cases. Because I speak out about injustice or else my feelings about the injustice will overflow and make me ragey and meltdowny, I’m the only voice in the room speaking out. No one who agrees with me ever openly supports what I’m saying, they don’t want the drama or the conflict (neither, it should be noted, do I). In front of me and behind my back, the tone shifts - I’m complained about, gossiped about, called names but in that nice tone of allistic voice that lets them get away with murder. I don’t have a lot of control over my own tone. And then the group setting becomes untenable, and I have to leave. Most of the time, what I’ve been warning about, I’m proven right about. There is no acknowledgement about this. Why did no one warn us, they lament. I did.
I am also autistic in an allistic world.
It’s a world where health services have been so systemically underfunded for so many decades that we are turning to charitable causes to meet basic need. It’s a world where health conditions have to be trendy enough to be cared about. It isn’t good enough anymore to slap together some homemade signs and shout in the town square together, a cause isn’t worth the cheap hospital sheets folk are dying on unless we have a sleek social media campaign, popular influencers on board, and ads on billboards.
It’s a world where only the loudest voice in the room is believed, but not if that voice isn’t also popular with monetary backing. You’d think we’d have grown out of high school cliques by now. Jo down the road who wants to chat with her MP about how she can’t access disability support anymore isn’t nearly as important a voice as Mark who has a radio show and $1000 to donate to their party.
It’s a world where there is a hierarchy of need that prioritises the easy need over the serious need. We don’t have adequate or appropriate eating disorder support in Aotearoa - the South Island only has 16 beds for the whole island and they’re super care rationed - but that’s not popular to talk about because apparently it’s just an attention seeking illness for sad teenage girls wanting to be pretty (eating disorders are the most lethal type of mental illness worldwide and impact people of all genders, ages, and races).
It’s a world where no one has the time or energy to read past the news headline, but the news headline is all about getting the clicks. Clicks = ad revenue = happy management. Who cares if no one actually reads what was written.
It’s a world where babies are being bombed with their parents, siblings, grandparents; in their schools, hospitals, homes, universities, makeshift tents, and apparently stopping that is “really complicated” because no one can be arsed looking back longer than a year in history or speaking out in the settings that they’ll be heard in - and that’s if they give a shit at all.
It’s a world where people are going hungry while supermarkets make bank, it’s a world where billionaires hoard exorbitant wealth and that’s cool cos that’s their retirement plan, and actually we should really make policy that helps them hoard more wealth.
It’s a world I’m really angry about. A world where I have this personal ethos of everyone doing their bit, so I do my bit. I do more than my bit. I exist in the liminal space of perpetual rolling autistic burnout with a fatigue disorder impacting my every movement. And I speak out about things that are fucked up, and that costs me energy, and then people (who usually don’t have access to, or haven’t chosen to access the same information I have) disagree with me based on vibes, and then I present evidence, and then they disagree with the evidence while producing none of their own. And after often weeks to months of nonsensical refusal to accept the information I am presenting that shows a better way, of being called everything under the sun but in that condescending allistic tone of politeness and “niceness”, I energy match and I snap back.
And then I’m pushed out. Again. Autistic in an allistic world. They call us black and white thinkers but here I am endlessly pushing for the grey space. They accuse us of being empathy-less (and yes, many autistics struggle with empathy) but they’re openly leaving a chunk of the crowd behind.
And then exactly what I warned about happens anyway. Pattern recognition’s a bitch and if my brain does it so automatically, why is it so exhausting.
And I wish I could be easy. I wish I could hold back my condemnation. I want to roll my eyes and carry on and ignore the problem until it explodes in our face like everyone else gets to. I want to feel generally kind of relaxed about the state of the world and affirmed in the fact that I probably couldn’t do anything anyway, and someone else will probably deal with it. But if my bit is speaking about the gaps, the grey spaces, the people we are leaving behind, by god I am doing my bit.
I have had a range of special interests across my life. From S Club 7 to aviation, to psychology and the wellbeing of our people. Advocacy has been a great vehicle for my special interest of human wellbeing, and I’m so lucky to have a job where I get to focus on exactly that. I’m doing a Masters where I get to focus on exactly that in a way that is organised nearly exactly how my brain will process the information: with rules and evidence. But the next Big Thing to grapple with is going to be ethics in policy. Can I really work for a public service where the government of the day cares more about vibes than evidence? How long would I even keep a job?
I don’t know yet, and as a lifelong gatherer of information I can tell you that I’m pretty excited to find out. But as a lifelong noticer of patterns, I’m pretty worried.
This piece was brought to you by the sick feeling in my tummy after I emailed school to explain exactly why our family don’t celebrate Well-Known Alcoholism Advocate Mike King’s G**mb**t Fr*d*y, and why we’ll donate to Youthline instead.
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