something I think about a lot is who is allowed to be an expert on their own life and who isn't - mostly in the context of illness and disability, but also in terms of lived experience generally.

the thing I keep thinking is that it always comes back to agency. who has agency and who is denied it? who decides? especially online, where there are so many ways to obscure exactly who you are, why is it the same people who are believed or disbelieved over and over?

I was writing a paper recently about a land rights case, milirrpum v nabalco, and one thing that's always struck me about it is that the white anthropologists who testified on behalf of the indigenous claimants were seen as more reliable than the indigenous people themselves.

that's racism at work, obviously. but not *just* racism, I think. the reason justice blackburn trusted the anthropologists more than the indigenous witnesses was that he believed that indigenous people were "simple and easily led" as witnesses because they were eager to please.

paternalism is a very insidious facet of bigotry. this idea that we know better, that we need to protect certain people because they can't protect themselves, that we need to be a "voice for the voiceless" - it's not just out-and-proud bigots who think this way.

isn't "voice for the voiceless" such an arrogant presumption? the indigenous claimants in milirrpum either spoke english or spoke through interpreters. they had voices and used them. when their case failed, they petitioned parliament. they could speak for themselves just fine.

but it's something I see a lot, especially with people who are mentally ill or chronically ill or disabled: this idea that they need people to speak for them, when of course we can speak perfectly well for ourselves, if you feel like listening.

agency isn't just about the ability to speak. it's about the ability to get people to listen to you. in fact, the second part is often more of a problem than the first.

I would say I have a reasonably-sized platform - not huge, but not insignificant. I'm light-skinned, live in the west, speak "standard" english well, am tertiary-educated - all signifiers of privilege.

I cannot post about being sick without getting unsolicited medical advice.

I can write, in capital letters, "DO NOT GIVE ME MEDICAL ADVICE" and without fail, someone with less medical knowledge and experience than me will reply with, "I know you said no medical advice, but..."

did I mention that my tertiary qualification is in human biology?

I went to medical school for four years. I've stitched people up, given babies their shots, taken blood, helped revive the dead. I would be willing to bet that the vast majority of my followers, unless they're doctors or nurses themselves, can't say the same.

I never want unsolicited medical advice, but I get it every time I talk about being sick, because everyone knows chronically ill and disabled people need to be taken care of, right? you've got to be a voice for the voiceless.

I am very much not voiceless: not about my illness, not about my disability, not about my race, not about the colonisation of my homeland, not about my gender, not about my sexuality, not about my faith. if I'm an expert on one subject, it's myself.

I am the world expert, the unchallenged authority, on what it is like to be me. but without agency, that doesn't matter. there will always be someone who thinks they know better - about my faith ("you're not really muslim"), about my gender or sexuality ("it's just a phase").

and some of those people are well-intentioned! for example, a lot of people who tell me I'm "not really muslim" are saying it because they associate islam with a series of negative ideas that they don't associate with me. they think they're being kind, even complimentary.

I've written about this before, actually - about the paternalism inherent in telling someone they can't really be religious because you don't like religious people but you like them. https://twitter.com/jaythenerdkid/status/1194688383890538496?s=09

paternalism is a curious devil. it's so easy to see it as a benevolent force - an improving one, even - something harmless, even helpful, because all you want is what's best for people.

and there's also the argument that if you don't want people offering you their opinions, you shouldn't be posting in "a public forum" which I must admit I've always found perplexing, because the streets are public, but do you accost random strangers to offer them your thoughts?

I think people confuse "public" with "unregulated" or "not subject to restrictions or expectations" and that's a funny idea, because surely your obligation to consider others and their feelings is paramount in public, where you're most likely to interact with people?

like, if you write your thoughts about disabled people all needing someone to be their "voice" in your private diary, surely that has much less effect on other people than your disrupting a disability rights rally, stealing the megaphone and talking over everyone?

a lot of people online seem to think it's their sworn duty to take the megaphone. paternalism and agency. you can't have both. real self-determination and autonomy are impossible as long as people who think they know best won't listen to those they're trying to "help."

this is very frustrating when you do, in fact, need help, but nobody will listen when you tell them exactly the type of help you need.

look at single-use straws. look at any kind of disability accommodation, really. people are experts on themselves. they know what they need.

paternalism feels good, and I think that's one reason it's such a hard habit to shake. people like feeling like heroes and saviours. but most people don't need heroes or saviours. we just need you to listen. it doesn't feel nearly as heroic, but it's so much more helpful.

shouldn't that be the most important thing?