a trip to the vets...

the Autistic, English-writing internet talks a lot about presuming competence. presuming competence is one of the founding principles of the neurodiversity model, it's also a prerequisite for treating people with dignity.

"presuming competence" means understanding that the person you're talking to is a Complex Human Being, with their own thoughts, feelings and needs. their inner lives are just as real and complex as your own, and whatever they're doing they're not doing it at you. Presuming Competence is really hard.

that person who speaks in a thick accent? occasionally stumbling over their grammar? well, they're still doing a lot better than you would in their first language.

the small child in the pram, screaming and disturbing the whole bus? clearly they have the self control of a 2 year old because, well, they're 2. they're learning to be part of society, but very much still a trainee human.

most people understand presumed competence in theory, as long as they're only being asked to apply it to experiences they understand. they may fail in practise, and whine about the baby on the bus, but they understand.

if you're neurodiverse, they don't understand. they insist they are presuming competence, and that's why they expect you to use your words, sit still, calm down. they know you're capable, so just do what they want.

I'm 27. I've been officially ND for 20 years, spent 19 years in formal education (both mainstream and "special"), am out as ND to my GP, and have accessed NHS funded mental health care. the first time I was spoken to with presumed competence by someone who had any sort of authority over me while I was having visible communication issues? last month. and she barely counts as having authority over me (fellow member of the organising team at an event, she was more experienced, and so had a sort of social authority but didn't officially outrank me. she also happened to be on duty at the time and I wasn't).

if I want people to see me as fully human, I have to pass for NT. that's fucked up.

so, what happens when you don't presume competence? well, I refuse to see 2 GPs at my local surgery because I know I won't be taken seriously. I'm also currently not interacting with the NHS on mental health unless it's related to my ESA claim. this might change, but not for the foreseeable future. I've also mostly decided not to disclose when I start training to be a counsellor. at most, I might disclose dyspraxia. maybe...

for me, the benefits of actually getting medical or educational support are now not worth the risk of being seen as subhuman in order to access said support. if I had anything life threatening, maybe I'd feel differently. more likely, I'd feel exactly the same way. I'd still be trapped between being human (but with limited access to health care) or going to the vets as a self narrating zoo exhibit.

"you could sell that!"

yes, I know. you mean it as a compliment. most of my friends even get that it's worth good money.

I'm not talking about materials cost + (time spent crafting X minimum wage)

or materials cost + (time spent crafting X london living wage)

or materials cost + ((time spent crafting + time spent marketing, doing accounts, queueing at the post office and all that other crap) X minimum wage)

or materials cost + ((time spent crafting + time spent marketing, doing accounts, queueing at the post office and all that other crap) X london living wage)

although, yes, most of the population actually do think 40 hours of advanced string play is worth about £10 and a bangle that needed to be baked in 5 stages is worth £15. thanks for acknowledging that. and yes, the maths works out slightly better for micro crochet because of the cute factor.

I tried selling anyway. months of build up to 2 weekends of open house sales. 2 days of being socially "on duty" from 8am-5pm, smiling through "it's beautiful, but I'd never wear it", being the young, pretty one sent out with a pile of flyers and brand-coloured tights. 5 days that were in theory "down time" except that I live with my mother, who was also part of the open house, then back on to do the whole thing again.

I sold precisely zero.

the whole experience triggered an SPD flair up. you know how radios have volume knobs? imagine the knob was actually in your ear. now imagine all your senses have volume knobs and some little shit has turned smell & texture up FULL.

smell up full means boiling white rice smells strong enough to make you retch. imagine trying to eat anyway. taste is (relatively) unaffected, so while that rice smells too strong, it somehow still tastes too bland to be appetising, and the texture is all wrong.

it's not worth it because I don't want to live off crackers for a week. again.

(this post was brought to you by other people's ravelry rants and the BiCon lunchtime catering. I need to get better at creative problem solving for this shit, or at least get a few scripts)

if you no what I mean, does it matter what I should of said?

"ain't nobody got time for that"

"and the lord said unto noah..."

"Wheear 'as ta bin sin ah saw thee?
On Ilkla Moor baht'at"

"when shall we three meet again, in thunder, lightning, or in rain?"

"ye banks an brea o bonny doon, ha can ye bloom sae fresh an fair?"

these 5 quotes all have a few things in common.

1. I (and most educated native English speakers) understand all of them.

2. they all use grammar & syntax that would sound wrong if I used them on this blog, or in casual conversation down the pub.

3. in fact, if I used them it would implicitly mock the respective dialects

4. but they are all valid dialects. they have their own grammar rules just as complex as any formal English.

...none of which helps us with the title.

at the BiCon ball, I was non-verbal for at least an hour. there was a code of conduct issue that normally wouldn't bother me, but a combination of guilt (I went into panicked fake-NT-everything-is-fine mode instead of telling him no like a good team member) and background BiCon shit (it's an... intense experience) and let it build up for a while...

...and the people around me were amazing. I mimed writing, and scribbled. I asked to go somewhere quiet, and scribbled some more. there were spelling mistakes, swear words, eccentric punctuation and many crossings out. there was a total lack of eye contact and mouth-based language. I was not passing for NT by any stretch of the imagination. generally, it takes a lot less than that for "well meaning" NT authority figures to totally dismiss my words. I wasn't rushed. when I handed over the paper, it was read silently and handed back. the response was calm and considered, accepting the validity of my words. the response was even spoken, which sped things up and saved me vital paper space.

...just another reason why I love BiCon. but still not directly linked to the title.

I know which there/their/they're, your/you're, know/no and even which/witch I need to use in a given context, but not weather/whether. it wasn't always like this. I remember when I was maybe 11 deciding to memorise the spelling of 1 there and 1 your and forget the apparently dense, arbitrary rules. it was that or give up trying to write. at 27, I get it. I'm doing everything I can not to become one of those arseholes who attempt to shame people into silence over "if you no what I mean", "I should of told him", or "any think". I probably have a stronger visceral reaction than you, because I remember the shame, but for the same reason I have a stronger desire not to humiliate people over this.

(and I try to construct sentences without whether/weather, I remember the humiliation. it still burns)

...and there is the crux of the argument. it is good to know which words to use and how to spell them. it is right that we teach our young how formal, written English works. what's not OK is "@username, *their, didn't you go to school?" whenever you're in an online debate. disagree on content, shout, swear, whatever. but with all my race & class privilege helping me (my "dialect" of spoken English is home counties - that is standard, formal british English with optional add ons for swearing and new-words-we-didn't-know-we-needed) I still actively have to compensate for my wonky brain if I want to avoid ridicule.

so, when it comes down to it, would you chose BiCon or school?

would you stand up for me, or for *should've/quiet hands/learn to spell/look me in the eye/use your words?

(this post has been brought to you by a facebook debate that ended far more amicably than any human interaction containing the words "sanctimonious git" has any reason to. substance over style, kids! it works)

Schrodinger-single!

I've been reading a lot of blogs, and now think I'm aromantic.

this answers some questions, most importantly why I fall in love on a geological timescale, and raises a whole lot more, mostly around the definition of "romance"and "romantic attraction".

here are some things I feel sure of:

- sex-repulsed is basically my default setting. if someone, of any gender, tries to get sexual with me, my instinct is to run away. it doesn't matter who it is, and the urge to escape is just as strong for a pretty acquaintance as it is for my baby brother.

- my sex-repulsion only applies to actual sexual contact involving me. there is nothing repulsive about other people's sex lives, or porn, or kink, or....(as long as it exclusively involves consenting adults, with or without inanimate objects) (actually, certain aspects of other people's sex lives are fascinating)

- occasionally, someone will get past my sexual repulsion. once I achieve a high enough emotional connection, some sort of attraction develops and sex is an option. just an option. if the relationship goes that way, great. if not, I'm still happy.

- I am not romance-repulsed in the cultural sense. I'm not in any way squicked out by love songs, rom coms or valentines day tat. I am frustrated that our culture is quite so saturated with this stuff, and that the romance shown is so narrow (heteronormative, sexual, monogamous, only showing young, conventionally attractive women (even if older men are fine), etc.), but it's not a visceral reaction in the same way.

- in the rare case that someone gets past my sex repulsion, I see "pretty" differently. and not just for them. there's a youtuber called Tom Scott who is suddenly very pretty in an abstract sense. he looks nothing like the person I'm actually attracted to, and irl sex with him is definitely not an option, but from the distance of the screen he's definitely pretty in a way he wouldn't be otherwise.wtf, brain?

- I really want kissing & snuggle time. non-euphemism bed sharing is kinda the point. these are the things I actively fantasise about, and can't imagine living without. I am currently living without them, but I can't imagine agreeing to be kiss-&-snuggle celibate for the rest of my life.

- there are a lot of words for various bits of the aromantic spectrum. I have tried to make sense of this. I suspect there isn't a bijective function between the identity words and the subjective experience of the people who use them, because there never is. there might be a difference between demi- and greyromantic, but it won't be universal. most likely all the 15 or so words for people-who-maybe-sometimes-feel-romantic-attraction-but-mostly-don't could refer to any of these people and their experiences, and which one you use is more a matter of which one you emotionally bonded to first. this isn't worth trying to figure out.

...and the things that I'm still trying to answer:

- what is romantic attraction? so, now there are 2 things other people feel that make them want to partner up that seem to be outside my experience, so I want to know how they differ. this is made harder by our mainstream culture conflating love, sex & romance as if they are exactly the same thing, and presenting that package deal as a universal human experience.

- what is the attraction that gets past my sex-repulsion? it's great fun, and I want more of it, so figuring this out might help me find it in the future.

- is there a line between good friends and queer platonic partners? where is it? can I have snuggle-time and eventual lizards? or is that called something else? this wouldn't matter, except for asking people out.

- erm, how's the cat?

70 years.

today, I want to talk about patriotism.

I've been raised under the rhetoric, but that's not real. britannia rules the waves? tea & crumpets? princess diana? 2 world wars and 1 world cup? get over yourself.

I love my country, but not for it's monarchy, it's colonial past, it's flag or sporting achievements...

...no, I salute the NHS.

I'm proud to have been born in an NHS hospital. born into a society that believes it's citizens deserve care and dignity, cradle to grave, free at the point of access. truly, this is the highest mark of civilisation.

born at the end of the second world war, the NHS was a glorious, utopian vision for the future, built when we were still reeling, emotionally and financially, from years of war.

but mr cameron & mr duncan-smith will never need it. utopia has no place for their self interest. a tory majority is an illness with potentially deadly complications for the NHS.

the VE day anniversary celebrations are on TV. I can't feel anything about that. WWII feels less and less relevant as we forget more and more of the lessons we supposedly learned from it.

terrible things happen when you blame all your problems on a vulnerable minority.

lest we forget.

how to fill out ESA forms, the easy way.

so, my friend has been trying to help me deal with the bureaucracy involved in claiming benefits. I suck at bureaucracy. UK benefits level of bureaucracy is very advanced adulting, thank you very much daily mail culture.

so, the powers that be sent a confusing waste of trees across 4 envelopes to my house. 2 of these were basically the same thing (please send us a doctor's note/if you don't send us a doctor's note you won't get paid) and one was basically a yes. the last one contained the abomination known as the ESA50.

the ESA50 is the dreaded prove-how-dysfunctional-you-really-are form. I went through writing names & addresses and ticking boxes. the long answers were harder. I resisted the temptation to write "I struggle with open ended questions due to disability, I want an easier form" under everything.

the first long question was that perennial favourite of NTs "so, how does your disability affect you?". interesting. how does being me affect me? I really have no idea. what does that question even mean? if being me didn't affect me, would I even be here to notice? hmmmm. of course, I know NTs raised within an NT centric culture don't see it that way, so I try to make some intelligent guesses about which bits of my experience they might pathologise in various ways. this works fine for Autism & dyspraxia, sort of. the NTs have left a clue! there are bullet points under the question, suggesting amongst other things that I write about any aids I use. I have a backup communication device permanently attached to the strap of my rucksack in case I lose the use of my vocal chords. it's more sensibly described as a "pen", and is mostly a preventative measure, but they did ask. I can't do the mental health stuff. next daft question...

...communication difficulties. yes, I have those. why are they asking this in the physical disabilities section? I make notes & move on...

...starting and finishing tasks. I didn't know where to start. the irony is strong with this one...

...coping with change. here we go with the stereotypes. I think I'm basically fine with change, but they include stuff like my train being delayed. that causes panic for reasons that have fuck all to do with an irrational, rigid sense that "it should be this way and anything else is wrong". I make some notes anyway...

...do I struggle meeting people? again, the examples given suggest I do, but in my mind? no, I love doing things with my fellow humans. it's just getting to the meeting place and finding the specific human I've arranged to meet, without having any ability to feel time passing. more notes, nearly done...

so, me, my notes and the form get on 2 buses to go see a friend who understands this shit. they understand why it's difficult, too. that's possibly more important than understanding the form. they also donate their handwriting, as mine is worthy of the NHS. they add a lot of things to the first question, possibly because that small amount of distance makes it easier to see how I affect me. I don't ask them about the deeper philosophical implications of the question. after 3 attempts to get a list of the effects of my mental health issues that all ended in me feeling shaky and wanting hugs (with knitting breaks) they gave up & wrote that I found the subject too distressing.

they felt it was probably sensible to talk about neurological communication issues in the physical disabilities section, as there wasn't a box for it in the neurological section. so we did that.

over the page, why did I tick to say my hazard awareness was fine? I thought it was. isn't it fine? the examples sound like cooking. I cook. I've only melted 1 chopping board...what do you mean, NTs don't set fire to the oven gloves? but it won't happen again, we have an electric hob, you can't set fire to the oven gloves with an electric hob (can you?). yes, OK, there was that other fire, but it was fully contained within the saucepan. I wasn't really going to burn down my halls. you're sure NTs don't do these things? not even when they're young & still learning?

(I still maintain my cooking is fine. I've never given anyone food poisoning, or injured myself or anyone else enough to require medical assistance, and I am able to put the oven gloves out if I need to...)

and that was all we managed to get done. to be continued...

undating

so, this is clearly too late for valentines day. screw that noise anyway.

no, this is about trashy TV. while channel-hopping recently, I found "the (un)datables". normally, I cringe at the yucky inspiration porn and flick on up, but 1. my ex's brother was on & 2. there isn't much happening beyond 4seven anyway. the episode I saw revisited a bisexual woman with tourettes & 2 Autistic guys (including said ex's big brother).

firstly, the good points:

• being a documentary (rather than a scripted drama), the bisexual woman was a well rounded, relatable human being. while she was visibly queer (she went on a date with a woman), she was never assumed to be a lesbian (she mentions an ex-boyfriend - not on the date, and the voiceover says she's bi) and her sexuality isn't made out to be A Huge Thing That Her Whole Life Revolves Around. more like this, please.
• Autistic adults! who actually get to speak for themselves. their parents are interviewed as well, but it's in line with documentaries on other subjects (they're showing multiple perspectives on the situation) rather than with most Autism documentaries (where the parent is clearly the focus). now, we just need some female representation and maybe, shock horror, some sexual variation (kinky, queer, happily asexual, your choice, channel 4, actually, please don't do asexual & Autistic, until you've got a bit more experience at doing both well individually. and, please, real kink, not 50 shades crap. I know enough queer Autistics to start a knitting circle, if you're interested...)

but...

WHY? why did they go on the dates they did? both Autistic guys, as far as I remember, exclusively went on dates that were absolutely small talk dependant. I'm as user-friendly as the average NT wants me to be, and nothing sounds less fun than "lets have coffee in the same place and talk about nothing in particular, to try and work out if we want to exchange phone numbers and bodily fluids in the future" (with the possible exception of blood tests. my blood wasn't meant to be "tested").

I wonder who made that decision? if it was the production team, fuck you, channel 4! this is people's lives you're messing with. a bad date might be one wasted afternoon to you, but when dating is made harder by a communication disability, and then further complicated by a culture that systemically erases your existence, the cost is much higher.

if it was the NTs in their lives, or the Autistics themselves, they have my sympathy, but I'm surprised no one made any other suggestion. I saw parents coaching their adult offspring to act as NT as possible on smalltalk-dependant dates with people they'd never met, and I really don't see the point.

if we assume the point of dating is to find a suitable life partner, why are "special interests" a banned topic? I get that NTs wish the Autistic in their lives wasn't quite so into ________, but wouldn't a partner who appreciated or even shared that passion be wonderful? if we're always told "don't talk about ______", we won't talk about ______, and we'll never know. for the record, I love hearing about the things my friends are into. I'll listen & ask questions about it, and be both entertained and educated on a subject I otherwise wouldn't think about very much. then it's my turn and I'll try to explain colour globes, and fractals, and tell them about my current knitting project. banning this stuff would rob me of the best part of my social relationships. if there's a risk of it becoming All About _______, set ground rules (some sort of safe word? timers so each person chooses a subject for 30 minutes, then switch? whatever works). basically, don't act like a completely different person on a date because that won't impress anyone you'll want to share your life with.

and, back to the dates themselves, why just sit & talk? not only does it not sound fun, it sounds functionally useless. go do things together! what things, I hear you ask? well, that depends. it depends on cost, location, the interests & sensory needs of those involved...

...having thought about it, I'd like to go to a paint your own pottery place. we'd get one small thing, and sit in the back corner of the shop with two brushes. the mug/pencil pot would give us something to talk about, and de-awkward any silences. if we wanted the date to last longer, we can get another thing to paint afterwards or go for a drink somewhere else. if we get together, we have the most sickeningly soppy memento of our first date, and if not we just don't go back to collect it. in any case, I'd leave with a much clearer idea of our compatability than I would if we just got a drink.

other ideas:

• cinema then a drink (the film is a thing to talk about, so no need to small talk)
• a museum or gallery
• take a cookery class together, or prepare a meal at one of your houses
• go to a castle, or other historical place of interest
• go shopping? (I had to put a token definitely-not-for-me option)
• do the coffee thing, but take some board games that work with 2 people
• ...or whatever sounds like a fun way to spend time with another human being

if none of these things sound fun to you, and you don't have any suggestion that sound fun to me, we probably shouldn't date. but that's OK. in a sense, a date where you discover you're incompatible with the other person is a successful date. it's only a waste of time if you think it's right because one or both of you were playing a part, or you leave with no idea.

in other news, I managed to forget it was valentines day until walking into a restaurant with a friend and asking for a table for 2. this despite remembering my mum's birthday, knowing that valentines day is always the day after that and capitalism's best efforts to make sure I knew about all the exciting opportunities to buy pink chocolate. I'm a little bit proud of that...