spectrumgarden - Tumblr blog

[spectrumgarden]

Honestly me at this point whenever a new carer shows up at the sheltered workshop

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Do any of my other autistic friends feel like they're inherently materialistic because of the fact that you have comfort items or have collecting items as a special interest. Because I struggle with this so much and it's intertwined with my moral OCD and it's killing me...

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Julia with our AAC!! we're planning to hand drawing and make images for our AAC. customize it. it'll take a while but we're excited to do it!! working on quite a few things so we're busy so that's good! ✍️🏾🧡

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Actually getting like, pretty annoyed by exclusively using AAC at the workshop, but it's not a Choice. So I cant.. change it. But it's so annoying all the time. Both because of just how it is to use I guess but also just because of new peoples reaction sometimes, I especially hate the "can he not speak?" Always directed at the carer who's around who I'm talking to using AAC. Like. You see that I can communicate. But you never address Me. & its across the board doesnt matter their own disability etc, no one addresses me. I'm so tired of it.

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i think lots of people do not realize how long it takes to set up aac (low tech or high tech)

low tech requires lots of printing and cutting and laminating and hole punching and more cutting etc

and high tech requires hours of sitting with device and customizing not just settings but words, folders, layout etc

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Post sitting below my desk biting and hitting myself moment where you hear the caregiver clack away on the keyboard.... like ah yes I'm being documenteddd

Edit: asked if i could read it cause I've always want to know documentation of me, usually was never allowed to see any / much of it.

He let me read it and it feels weird maybe because its so clinical, but also apparently they call this "crisis" .. not my favorite but not sure what I'd change it for lol

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i have been in community with profoundly developmentally disabled peers and peers with brain damage my whole life, bc i had a childhood diagnosis. i have also been leftist my whole life; my mother was a marxist and raised me that way, and while their politics were absolute dogshit, they were lefty dogshit.

my entire life, i have seen leftist educators throw mentally disabled people away as "lost causes" because they couldn't engage with the material the way it was being presented. leftist outreach and education does, genuinely, have a massive lack of accessible material. to be blunt, people are not interested in retrofitting their leftist outreach to be accessible to people who learn best through episodes of sesame street.

as in, i have repeatedly faced outright laughter and cruelty over the idea that this could be a priority. or even something that we consider doing at all.

"people who are that mentally disabled don't need to know about these things," the kindest interpretation goes. ("people who are that mentally disabled don't interact with the world, anyway, they're all in institutions or monitored 24/7 by their parents," the uncharitable underlying assumptions go. "they wouldn't be a worker who needs a union. or a library attendee. or a member of the community garden. or a volunteer at the food bank. or or or")

the people i have seen this hurt the worst, over and over again, are profoundly mentally disabled people of color whose lack of access to accessible antiracist education is causing real danger in their lives. institutionalized disabled people of color who have learned racist ideology and behaviors from white authority, whether they were adopted by white families or incarcerated in care institutions run by white staff. who are treated lower than garbage by leftist educators, who view them as "lost causes," as unworthy of time and effort and attention, as deserving of their abuses because they... what... internalized the abuses that make up every aspect of their lives since birth?

i see people saying things in this conversation like "disability isn't an excuse for racism or transphobia or whatever, people have the obligation to improve themselves." oh, believe me, i have seen again and again how many privileged disabled people utilize their disabilities to punch down on others, try to escape accountability for their punching down by citing disability. but individual weaponization of identity is just that: weaponization of identity.

the power structures at play are what they are. it is a noble and admirable goal to want leftist outreach and education to be more accessible to all. if that is truly your goal, you must eventually reckon with the existence of people who do, actually, really need it presented in a picture book. or an episode of bluey. or a conversation where you only use examples of people they know in real life, using things that happened to them personally. the existence of people who cannot grasp forms of abstract reasoning, who need information presented as rules, or as guidelines, or as categories. the idea that yes, fully grown adults who need daniel tiger to explain racism to them are human beings who not only deserve access to that very thing, but who also deserve to be a part of leftist spaces and benefit from leftist organizing. are people for whom it might be INTEGRAL they get to be a part of leftism. are victims of racism themselves and suffering without access to antiracist spaces and community and support.

and you will need to reckon with the abject cruelty of your peers who laugh and mock the very idea of this. you need to reckon with the fact that a lot of people you respect, a lot of leftists doing genuinely good work, will respond to this by making fun of the people you're serving, even outright telling you their violent fantasies about these people. that is the experience of organizing in leftist spaces for profoundly disabled people. that is why so many of us burn out so fast. there IS a structural problem with mentally disabled people being seen as disposable and not a part of community. and it is EXTREMELY present in leftist organizing and outreach efforts.

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I genuinely think it would do disability activism on this website (and to some extent, Twitter) a world of good if more people learned, understood and used the term “developmentally disabled”.

There would hopefully be fewer “neurodivergent is strictly for autistic people/people with ADHD/etc. only!” posts because people would recognise that there was already a term for that and we don’t need to redefine “neurodivergent” (which has always been inclusive). There would be fewer posts talking about “autism and ADHD” when they were actually just applicable to developmental disability as a whole. We wouldn’t have people saying “I’m autistic but I don’t know what it’s like to be developmentally disabled” when autism is literally a developmental disability (OK, I saw that one on another site, but still).

That’s why I’ve been making such an effort to use the term lately. It seems a lot of people on here - especially younger people - just… genuinely aren’t aware of it. And I’m hoping maybe I can spread awareness that it’s a thing.

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have you ever posted a picture of your hatsune miku figures ?

No, I dont think I have on any other accounts either.

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I have a lot of complicated feelings around carework, etc. But something I always struggle to wrap my head around still is how at the workshop, a lot of what should be considered care work, etc, is done between the disabled people working there with me.

People interpret sign for the hired carers, since most of them dont understand any of it. They explain what someone with hard to understand speech means. They help powerchair users with (very) limited mobility access tables, computers, ... They cut up lunch for someone else. They explain why you need to change your clothes after having an accident until the other person understands it. They remind each other to drink or use the bathroom. They refill the water in the specific bottles that some of the powerchair users need. They get things from the printer for others. Etc etc

And on one hand, I find it somewhat nice to see. That people care so much about each other, to jump into action when needed immediately. Personally because of my autism & lack of like, awareness around me, I often don't realize someone needs help unless they ask for it directly. Oftentimes people help me with interpreting sign, or directions, drinking, ....

But at the same time, it feels like such a slap in the face because while there Is a difference between what some of the hired carers do (help with toileting, physiotherapy, wound care, ...) and this care work, it is also theoretically Their Job. But theres not enough of them a lot of the time. So we all do it. And we dont mind, I guess most of the time, most people, at least. But it's not recognized financially obviously. The same way a lot of care work is not, care work that's done by family or community members, predominantly women, .... this too is something that's necessary, but it feels like no one "with power" cares about it. The hired carers might praise you for doing something (especially if it's for people with limited mobility), but praise does not pay our rent the way their wages pay their own rent. Every single person working there is in need of government assistance to pay rent, food, ... or the "price" of living in an institution. Yet aside from the exploitation when it comes to the products we produce (and janitorial work, etc), this care work is put on top of it.

And it feels so complicated because I dont think care work needs to be 100% replaced by people who's entire job is care work, that it needs to be "professional" environment all the time, that the solution to unpaid care work is to remove this task from people who are already doing it to put it into the hands of nurses, ... but some days it turns my stomach to see this, see what we are expected to do with how little reward we get of it.

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I dont think I've talked about this before, or more than in a single sentence tag... and we (disabled community) had the conversation earlier this year, and before and before and before. That disability spaces need to be open to caregivers, obviously, if someone needs them for it to be an accessible space. I get the focus on disability spaces since obviously, being disabled and being excluded, not even by physical barriers or something, from disability spaces, by rules that could be changed in a second to allow your carer(s) in, is fucking heartbreaking and stuff.

But also we need this energy for all spaces please. I remember being like 17, and my supportive mother found a local queer group online that she had reached out to to help her with resources for my medical transition. They invited us over to talk irl, it was alright (it was before my AAC so I didnt communicate beyond head shake / nod, barely) and then they offered me to join their trans group for support emotional. When my mother explained that I dont do things alone (autism), that I cant, that its dangerous for me, they told her she as my carer couldnt be there because shes cis. They would rather fully exclude me, then allow my carer to join.

Its genuinely time people see carers as purely extensions of the disabled person in many areas & situations. They allow us access. Without them, there is no us. She would not be there to speak as a cis person, perhaps speak at all aside from voice my needs, ... but still. Rules are rules, think about the others.

Well, no one thought about 17 year old disabled me who did not leave the house alone. Who had zero queer community in real life. It could have been worked out. Trialed. Explained. Worked through. But No.

And dont let me get into covid restrictions that limited some spaces to one person x the professional / etc, where people had to break laws to allow me access or turn me and my carer away.

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These tags made me like... feel things so..

The comment that prompted my original post (after seeing this attitude everywhere for years though) was about people not wanting explanations as part of apologies, something my (also) autistic ex routinely expressed when I tried explaining my reasons for behaviors when apologizing. I think this is important too because while "cold and has no empathy" is in fact a very common autistic & otherwise ND trait, and they absolutely do it to those too, in various forms... they actually just do this with anything under the sun.

So "Act I dislike" was a very deliberate choice, because its vague enough to cover all those situations and does not actually put value on the action myself. and because as much as they think they are "analyzing" differences between neurodivergent and neurotypical people, they are actually just making a new "bad and good people" dichotomy, once again implied to be biological, with often no regard to actually looking at the whole picture of known traits of autism, adhd .. (because they also 95% of the time use neurotypical as a shorthand for does not have (a very specific type of) autism or adhd, which is.... wrong, but something others have ranted about enough I think).

The goal is not to find a deeper understanding of why "NTs" do things, or help bridge that gap that often exists. Or even understand autism, adhd or the whole area of neurodivergency in all its forms. It's to feel superior because they Do Not Do the Bad thing, because they are not the Bad Type of person (NT), who do Bad Things because they are neurologically wired to be Bad to them and cause them suffering, the Good People (ND) who are smarter and nicer and better.

Which obviously has to use really broad generalizations, because how else do you manage to convince yourself and others that these two groups of good ND person and Bad NT person absolutely exist Like That, and always can be applied in these very easy snappy ways. if you view things on a more individual basis and with the understanding that people can have a million different reasons to act similarly, it destroys that. Two NT people frequently have different reasoning for the same actions. So do too ND people. A NT and a ND person can have the same reasoning, or not. They can act the same or not. But that's not feel good material enough.

Imploring you all, begging on my knees, to abandon this line of thinking, no matter how good it makes you feel:

"Neurotypicals do this [act I dislike, which I'm positioning as the opposite of my autistic traits] because of [singular reasoning in which I act like all neurotypical people think exactly alike, and they think like this because they are neurotypical]"

You are honestly doing like, very weird bio essentialism as this point. Please stop. You do not want to get rid of harmful shit, you just want to be on top this time.

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Hey so you know what's fucked though. That my doctors and also my mothers forms said I'm prone to eloping when I started working at the disability workshop, I eloped one day recently (luckily didnt end up on the street I guess) and when I naively asked one of the carers the next day what they would do if I did end up completely off the property and wandering / running through the neighborhood... he said, "oh, we would call the cops. I mean, we have to" and also seemed really surprised when I told him my school would fucking call my parents first and not the cops. So. Yeah. Why the fuck did they not at least tell me / my mother this when I 'signed up'? I feel like "routine procedure is calling the cops for this thing you're known to do" is pretty fucking important actually

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i'm sorry but i don't think we should call this the "autism website" when there's still posts with tons of notes mocking people who:

struggle with social skills / have anxiety around social settings

are unemployed / unable to work certain jobs

have intense or "age-inappropriate" interests

haven't had certain life experiences that are deemed universal/essential

struggle with personal hygiene

don't have any friends or dating experience

don't go outside much or at all

take things literally / don't get sarcasm/jokes

have unusual ways of speaking

generally aren't "normal"

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The idea that aac fixes everything for everyone is kinda annoying. Because most nonverbal nonspeaking semiverbal people’s speech problems root further from just verbal voice.

Not understanding have right communicate. Not understanding how work. Not understanding how to say what feel or want or think. Not understanding certain words or phrases so say one thing and mean another. Many have speech or communication disorders, it’s not just the inability to speak, aac won’t fix everything for everyone.

Even if some get aac, an option to communicate, they just can’t. Sometimes no matter how much want to, just can’t.

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Imploring you all, begging on my knees, to abandon this line of thinking, no matter how good it makes you feel:

"Neurotypicals do this [act I dislike, which I'm positioning as the opposite of my autistic traits] because of [singular reasoning in which I act like all neurotypical people think exactly alike, and they think like this because they are neurotypical]"

You are honestly doing like, very weird bio essentialism as this point. Please stop. You do not want to get rid of harmful shit, you just want to be on top this time.