#neuroqueering

[elaurianwellness]

It's so easy to forget about! Scheduling it (in whatever way works for you!) is a really good way for a lot of folk to make that side of life easier. Even just learning to check in with the computer to see if all systems are functioning normally can be useful!

[nelofairc]

i’ve cleared out an old account to try something different. i don’t usually post under pseudonyms, but things are what they are. i’m hoping this conscious effort will help break me out of a whackload of self-silencing while placing a few gentle protections around myself (curious to see if anyone twigs the username, too). the aim is to build more of a ‘window of tolerance’ around my words roaming out in the world, and to (attempt to) guard against those who type angrily into the void while forgetting their own, and their recipient’s, humanity.

idk if tumblr is the best place for it, everywhere seems so image/video oriented these days and i’m a words person (tl;dr mostly, soz/not soz). yeah there’s substack, patreon, medium, ghost, etc (and old versions of myself have all of them - i’ve been around the net for a wwhhiillee). but i’m here to build internal confidence, not income or vast follower numbers to become an ‘influencer’ (and definitely not to make profits for platforms who mostly seem fine with bigots). and i wanna say the kinda things which might feel a bit harsh to receive unexpectedly in your inbox. a while back i read that Neil Gaiman’s response to ‘why tumblr?’ was “because it’s quiet here”, and that stuck with me. i like quiet. i need quiet. so here we are.

let’s start with a biggie.

content notes: gender affirmation; breast cancer; suicidal ideation; death; trauma informed care provision; neuroqueering.

…

i found a lump in my boob a while ago. not my first - that one was when i was around 14years old, when i was referred to a specialist who happened to be the father of a friend i was at school with. the friend apparently had a crush on me, and was kinda pissed that his dad had seen my boobs when he hadn’t! the specialist described that lump as ‘gristle’, which i’m pretty sure wasn’t the scientific terminology …but i digress…

i don’t check for lumps often (*adds gentle nudge to encourage everyone to do it more often than me*) but for some reason i’d decided it would be a good idea since wintertime. my first thought when i found it was “oh cool! top surgery without the battle!” and then “…oh”.

i came out as nonbinary a couple years ago, having swirled with thoughts around it for a long time before that. i’ll probably write more about all of that another time, but for now the point is that… i didn’t think i was ‘there’ yet. i didn’t think i wanted top surgery, or any kind of gender reassignment surgery. i’ve never been particularly interested in becoming ‘more male’, and while there are myriad reasons why one might want or need top/reconstructive surgery which don’t involve gender, i had no idea any part of my consciousness was considering such concepts. so that was a thing.

i’ve been doing a LOT of trauma recovery work, especially over the last year+ having finally found a Somatic Experiencing specialist who i could actually afford (thanks, eventually, to PIP, although that’s a story in itself too). she is all kinds of affirming, and plain wonderful, and SE has been helping me to break through Interoception blocks and begin building an entirely new relationship with my body. i still can’t hear/translate everything my body has to teach me, but i’ve been listening out for its signals more, and have had some pretty wild experiences along the way.

i’ve been in extreme hermitude for years. there’s a long backstory (obvs), but cPTSD and the late discovery that your brain isn’t like other people’s brains can do that. i used to have a life, of a sort. i definitely used to have a career, which was my everything, my entire identity. i’d been swimming against the stream to hold either of them precariously together (fuelled largely by alcohol abuse, from which i’m now around 4.5years free), but there were reasons to keep going. just. over the last decade or so, those reasons have been getting harder and harder to find, or trust, or hold onto. the potential of a cancer diagnosis was, in part, a relief. suicide is ‘bad, yo’. cancer is respected, honoured, cared for. no one would blame me if i died of ‘natural causes’, but to choose to end one’s life, or even to talk openly about the endless pain of staying in a life you felt was no longer serving you: nup.

i found this lump shortly before discovering that an old college friend, who’s been through two rounds of chemo already, had a double mastectomy, and had been in remission for a year, was no longer cancer-free. hers had returned in a way which can be treated, but not cured. she is someone with a huge lust for life, her celebration of existence has been front and centre throughout her cancer journey. blessed with a loving family (including a young daughter), and with a huge capacity for social engagement and a friendship group i could barely imagine, it feels especially cruel. my sense of relief about my own potential diagnosis made this even more fucked up. why should she die so young, when she had so very many things to live for? and how could i be so cavalier about my own?

i don’t have the best relationship with medical services. i could recount numerous battles i’ve had with the NHS - everything from being denied any form of care due to being homeless (which i later found out was illegal); being denied a referral for an autism diagnosis because i had refused anti-depressants (resulting in an 8page letter to the NHS Trust which my autism assessor later described as “the most autistic thing you could have done”); being sent on countless infinity loops of waiting lists which ended with “your needs are too complex” (when i’d already told them that CBT was not gonna work for me and been promised that ‘no, this one really does offer trauma support’); and being denied HRT when i hit perimenopause because i identify as nonbinary (um, whut?). i can go mute when activated, and with all this (and more) medicalised trauma, all medical anythings are activating for me. so phonecalls Do Not Work for me, and the NHS is obsessed with phones, and their staff apparently unable to receive or read or reply to emails. so it took a while for me to gather the capacity to book an appointment with the GP to get the lump checked. typically, i just don’t bother unless it’s desperate, but with my friend’s situation in mind, i figured this one might need to be taken seriously.

i’d requested the appointment through yet another new GP, to me. i’ve now been through every single General Practice local to where i live. each one has caused thoughtless and unnecessary problems at best, and downright discrimination and harm at worst. i’ve often wondered what it might be like to have had one GP your whole life - or even for a few years. durational care, with a trusted someone, who knows your history because they have lived it with you, and who cares about you not just because it’s their job but because you’re a member of the community they are part of. jeesh, that’d be nice, eh? this being a whole new faceless entity, and this being my boob, and my having a bunch of #metoo amongst the trauma, i’d specifically requested to not have a cis male GP for this one. lo and behold, i arrived to find a cis male inviting me in for the consult. sigh. (eventually, after i’d dropped into total meltdown, he went to find a female Practice Nurse who did the consult instead… but WHY won’t they listen?)

the Nurse confirmed that she felt what i felt, and that as the lump was neither moving nor painful, it was enough to merit a referral to the Cancer Clinic. after YEARS of begging for some form of text-based comms system, the impact of receiving an invitation to join an entire cancer comms platform was… huge, and not in a good way. this platform held every single correspondence between every single clinician, all test results from every department, and the ability to book or change appointments, with easy-access messaging between everyone, and the promise of an appointment within a fortnight. ooft. while i am clearly extremely grateful to see the depth of care which goes into cancer support… i was left feeling enraged. WHY is this not available for everyone, for all conditions, all the time? why is cancer the most funded medical need in the world, when all conditions can cause equal suffering and deserve equal care?

when i arrived at the appointment, the primary clinician asked me what pronouns i use. i almost burst into tears. the only medical anyone who has ever done that for me before was the incredible Menopause Specialist i was able to access when i was a temporary patient in Wales last year (who had no qualms giving me all HRT, including Testosterone). this is Not Common, folks. while i was recovering from the shock of this empathetic offering, she told me they were a gender affirming practice. i started to tell her about my first reaction to finding the lump, and she said “i bet i know what you’re going to say; it’s more common than you’d think”. blimey. and then she offered me a quiet room to hang out in between the various tests, instead of having to sit in the waiting room, where they kept checking in on me to offer a cuppa or to just make sure i was okay. and at the end of my various tests, she told me there’s a gender-affirming service in my city where i could discuss any thoughts around top surgery, should i choose to go that route. This Is What Gender- and Neuro- Affirming Care Looks Like, People!

it turned out that my lump was a cyst, which they expertly sucked out with a syringe, showing me the tiny globule of creamy gloop which had caused so much inner turmoil. even with the affirming care, after four+ hours of all this i had dropped into dissociation, exhausted. i think they expected some form of joy at this news that i wasn’t going to die after all (at least, not imminently). i didn’t feel joy, i felt disappointment. i took myself home and sobbed.

i struggle to let people in to my life. i struggle to receive any love i am offered. but with the threat of cancer looming over my head, i had felt brave enough to tell a small handful of people… except my sister. we have an amazing relationship, having been through a lot together (we share the same root trauma which we were dragged back through a few years ago together, the same neurodivergence, and she has a chronic pain condition on top). i didn’t want her to worry about me, especially while she was doing the biggest project of her life and somewhat overloaded herself at the time. so i’d decided not to tell her unless there was actually something to tell her. when i finally did announce the now-not-really-news, she’d said “oh i’ve had a few of those. i probably wouldn’t have been worried, they’re really common”. an anticlimax, to be sure. i didn’t tell her i hadn’t been relieved. that’s a kinda fucked up thing to tell people, right?

so why wasn’t i relieved? surely this kinda of experience gives people a new lease on life, a fresh beginning, a reminder of how precious our short existences are. i just felt disappointed that i didn’t have a ‘valid reason’ to stop fighting. dying of cancer is deemed honourable. struggling to live is deemed your own fault. i felt guilty that my friend is dying and i am not, furious at the inequality between medical conditions and their default care practices, and utterly, utterly gutted that there was still no end to my own misery. and i was also appalled at myself. i’d been able to reach out to people who have been trying to tell me they care, but only about cancer. that permission was now banished once again, all of my other chronic needs falling back into neglect and stigma. ugh. i realised that no matter how much work i’d been doing to ‘recover’ and build a new life, i really didn’t want one after all. i did not matter, to myself. and if you’re not in your own corner, there’s not much hope for your future, is there?

so that’s where my head has been for the last couple months. those are the kinda things i’ve been stuffing down inside. that’s the shame and guilt i’ve been holding onto, beating myself with. i’ve been wanting to get blind drunk and wipe it all out ever since (but i haven’t). begrudging the parts of me which are still ‘doing the work’ to get better, while hating myself for being so bloody selfish and ungrateful to want to throw away something so precious. it’s been… confusing. and it’s caused a major downturn in my recovery process, with me falling back into deep dark depressions and restricted eating patterns, and hiding myself away because who the fuck am i and what the fuck does anything mean, anymore?

the very lovely poet Tom Hirons has a writing exercise which starts with “what i want to say is…”, goes on to “what i REALLY want to say is…”, and ends with “what i really, really do NOT want to say is…”. he believes we sometimes need to get the stuff we’re avoiding out into the open, to clear the way for the stuff it’s blocking. so this is my current offering to the word-spirits. i really, REALLY, do NOT want to say that i am am cancer free and not going to die.

i wonder what happens next.

[astuteandkind]

I love writing love letters.

So much that I made a show where I write love letters to strangers. It's going on tour to Orlando Fringe this May and you can help:

build the world of the show in a community-based, sustainable way

donate to Zebra Youth, a charity that houses LBGTQ+ young people in need of a proper, loving family

by grabbing something from the Love In x Zebra Youth Targé(t) registry here.

All set pieces donated will be treated with care through the run of the show and then brought to their forever home at the Zebra house!

And if you want me to send you a love letter as a thank you.... I'm more than glad!

[transsexualfiend]

If you want to call yourself "madpunk", "cripplepunk", "neuropunk", etc, your activism better not stop at the things you find "bad". People with no empathy. People with personality disorders. People who need their aids in daily life. People who have extreme fluctuating emotions. People with paraphilias. People with dissociative disorders. Psychotic people. People who have different modes of eating, excreting, having sex, etc. Homeless people. People who wear diapers. People who have violent urges/thoughts. People who you think are "dangerous". People who use drugs. People who need medication to survive and live. People with physical deformities. People who have delusions. People who struggle with feeding themselves, cleaning, working, etc.

If you think any of these factors make someone "abusive", you are ableist. Abusers are abusive. None of the above things make someone an abuser.

Madpunk and cripplepunk aren't just "adhd and autism punk". Or "mobility aid user punk". Keep that in mind.

[thatwritererinoriordan]

A Treatise on Chaos: Embracing the Chaotic Self and the art of neuroqueering Paperback – Large Print, January 23, 2023

(Free for Kindle Unlimited!)

[sleepycatten]

PSA

If you want to be a girl, you can just be a girl.

If you want to be a boy, you can just be a boy.

& your options aren't limited to the binary.

Maybe you're a combination of genders.

Maybe you have no gender.

Maybe your gender is fluid.

Maybe it's intrinsically linked to your neurodivergence.

Or maybe it's something else entirely.

You can just be you 💖

[anomalousmancunt]

this disability pride month i'd like to remind y'all that "visibly disabled" does not imply "mobility aid user" (nor anything else other than "people can see there is something about you that doesn't fit abled hegemony")

OP is autistic and talking about its experiences being autistic (AND multiply disabled). don't fucking touch if you have no solidarity towards autistic people.

[dysgeographica]

there’s nothing wrong with needing to use gps directions to get everywhere.

it doesn’t mean you’re “stupid”, it doesn’t mean you’re not trying hard enough or not paying enough attention. it doesn’t mean you’re doing something wrong or taking the easy way out. it doesn’t mean you shouldn’t be allowed to be independent.

yes, even if you need it to get somewhere you’ve been a million times before. even if you need it to get around the town you’ve lived in your entire life. even if other people think you should be able to go without it.

if you wouldn’t judge another disabled person for using certain tools that let them live more independently, don’t judge yourself for doing the same.

and never ever let someone else shame you into going out into the world without the tools that allow you to feel safe.

these tools exist to be used, so use them if you need them. there’s no shame in needing help.

[fairyb0ii]

They say:

-You can't be AuDHDer because you are "normal".

-We're all a little autistic/ADHD.

-You can't be AuDHDer because you are queer and trans and you had s3x with your partner.

And stuff like that.

But when I don't mask, when I show autistic and ADHD joy, when I stim, when they see my special interests, they say I'm "weird", "childish" or "stupid".

When I show my difficulties, when I need support, when I have repetitive and racing thoughts, they say I'm "picky", "selfish", "spoiled".

When I have a meltdown or a shutdown, they say I'm "mad".

When they know that I am neurodivergent, they say I'm "ill".

I'm not ill, mad, spoiled, selfish, picky, stupid, childish or weird.

AuDHD is a disability, difficulty, joy, special interests, hyperfocus, mood swings, hypersensitivity, etc...

AuDHD is not an illness.

[teaktty]

Badges I made over the last few weeks

[elaurianwellness]

So excited to send my first ever Wellbeing Package through Patreon!

The Wee Wellbeing Package

5 minute meditation written and recorded by yours truly 5 affirmations 5 self care practices to try

* 2 packages a month

* For just £4 a month!

Video Description - A computer screen showing me clicking the button to publish my first Wellbeing Package.

[strange-nd-creature]

I guess it’s because I’m neurodivergent, but all my internet friends think I’m significantly older than I actually am because I talk in a very formal way.

However, all my offline friends think I’m significantly younger than I actually am, because I’m also trans/genderfluid and I look like a (taller) prepubescent boy.

[astuteandkind]

Trephination for the Twenty-First Century is going on tour!

Dates across the UK have been confirmed, with ongoing talks to take the tour out to venues across Europe, and as the #TrephinationTour's ACE funding deadline approaches, your help is needed to show the Arts Council that mentally ill stories told by mentally ill people are viable investments. 

Why is Trephination going on tour?

The mission #TrephinationTour seeks to accomplish is opening conversations about mental health and phenonema freed of diagnostic labels in local communities. These conversations, sparked by the show, will be facilitated in care conversations following every staging and in workshops where Amanda will guide participants through expressing their own subjective experiences.

Why should I donate?

The projected budget for the #TrephinationTour to pay participating artists a living wage is around £20,000, and the more outside funding Arts Council England sees going into the tour, the more likely they are to invest in fully funding the show. Any amount is a show of faith in the mad liberation work of this tour, and truly makes a difference.

How will I be credited?

If you provide it, your name will be listed in the programmes handed out at performances and in the collection of "trephinations" written by audience-participants in workshops at participating venues. 

[sophies-library]

Alexa, How do you make friends when you're autistic?

As an autistic person I constantly feel like every time I open my mouth I dig myself a deeper grave, and all I wanna do is understand and connect with people.

I feel so isolated and I have absolutely no idea how to meet new people.

Anyone wanna be friends?

[myneurogenderramblings]

I saw this in a bunch of DNIs while going through and looking at neuroqueer content, so I guess I’ll make this post.

If your DNI says “DNI pedos/zoos”, “DNI MAPs/NOMAPs” or any other way of listing paraphilic disorders without specifying that you are only referring to pro-contact individuals, you are not a safe space for neuroqueer people or neurodivergent people in general.

I feel like people forget that paraphilic disorders are disorders. And just like how not everyone with a personality disorder is an abuser (a fact the majority of the neuroqueer community seems to grasp) not everyone with a paraphilic disorder is an abuser either. And when you make it clear that these people aren’t welcome due to something they can’t control, you don’t just hurt those with paraphilias. You hurt others too.

Take me for example. I have a clinical phobia, an intense fear of one specific thing. That specific thing is animals. I did not choose to develop this phobia, it developed as a result of a traumatic experience with an animal when I was young. I also have other trauma that has given me an overdeveloped fight response, or intense desires to fight or destroy whatever is currently causing me distress. This combines so that I have fantasies of hurting or killing animals I come across. A desire to get rid of the thing causing me fear. I don’t want to act on these desires. But the truth is that these desires are there.

Now, I ask you, what is the difference between me and an anti-contact zoophile? Both of us have desires and fantasies surrounding harming animals. Neither of us wish to act on our desires in real life. The only difference is that my desires aren’t sexual in any way. But why should this matter? Should I really be allowed in neurodivergent spaces when zoophiles are not? Should we both be shunned for things we didn’t choose and don’t control? If you choose the first option, you’re a hypocrite. If you choose the second, you’re ableist.

When I see blogs that explicitly mention zoophiles in their “do not interact with my posts” stuff, I, a non-zoophile, know that the full extent of my neurodivergence is not wanted. The autism stuff is. Because autism is “mundane”. My phobia is not.

I don’t really know how to wrap this up so I’m just going to end it here. I might add more later.

[devinsturk]

A Manifesto for the Liberated Autistic

(written by one Autistic person!)

Communication is a human right!  We demand access to whatever form of communication we choose, including unconditional access to Augmented and Alternative Communication technologies.

We demand autonomy over our own bodies and rightful decision-making powers over our own lives as we see fit.

We demand freedom from police brutality and all forms of abuse, including seclusion and physical and chemical restraint in schools and hospitals, and we demand freedom from all forms of violence, including filicide.

We demand that the shameful Judge Rotenberg Center in Canton, Massachusetts—and all other institutions like it—be shut down.  #StopTheShock

ABA (Applied Behavior Analysis) is conversion therapy for autistics.  We demand freedom from all oppressive “interventions” or “treatments” and quack “cures” for Autism which seek to rob us of what—and who—we are.

We demand unsegregated access to an education alongside our peers.

We demand access to our own communities and our own cultures, and we demand access to knowledge of our people’s history!

We demand meaningful employment and an end to sub-minimum wage for all disabled people.

The way we move is political, and we demand freedom from all pressures to “behave” in accordance with neurotypical standards.  Embrace the stim!  

We must commit to cross-disability solidarity and cross-movement solidarity.

#ActuallyAutistic people are the REAL experts on Autism.