Categories
Spotlight

Truth Beacon – Experiences

The scientific literature is accurate, as far it goes. Multiple sclerosis results in progressive disability (there are scales for measuring this) or loss of function (you don’t need scales for this). But science is empirical, confined to the observable sphere. Science doesn’t know what anything feels like, the nature of anything. […]

Out of context, Paraic O’Donnell

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disability is a complex identity {if it even is (considered as) one}, and disabled people are multifaceted non-monolithic human beings

Partial quote, Wendy Lu

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The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. […]

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. […]

Out of context, Mel Baggs

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Some of the better research I’ve been part of has given me space somewhere to share what I think and feel or how my experiences do or don’t fit. It also follows up in some way with the conclusions. There’s a relationship, a sense of reciprocity at least in the process even if we don’t agree at all about anything else. It doesn’t have to be participatory to be collaborative in that sense. Nor does participatory research bypass issues of exploitation or harm in and of itself. The nature of community is the diversity of perspectives and voice – it is rare to be able to accomodate each of them.

The other kinds of research (and I include interview here) feel exploitative. My experiences are collected as evidence of ideas I don’t agree with and contorted to fit arguments that don’t include me. Or they are simply inept, using my time to educate themselves on matters they haven’t bothered to read about.

Sarah K Reece

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It’s perfectly okay to cherry pick ideas and strategies from different – even conflicting – frameworks to create something individual and effective for yourself/selves.

The Dissociative Initiative

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[…] assume they are a person, and remember what you don’t know.

Julia Bascom

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In the same series:

Categories
Spectrum

Lines – Glass (Part 2)

There are two definitions for inertia: 1) indisposition to motion, exertion, or change (“I don’t like or fear change.”) and 2) a property of matter by which it remains at rest or in uniform motion in the same straight line unless acted upon by some external force.

Generally speaking, people tend to be inert.  We develop habits, and we stick to them.  It doesn’t matter if the habits are good or bad.  We like predictability (“I like my car and would like to keep it.”).  We don’t want to be confronted on how we do things, what we think, or how we interact with others.  If it’s always been done a certain way, then most people will continue in this customary fashion from the smallest habit to the grandest cultural traditions.  In terms of inertia, this is called uniform motion.  For the most part, we like to remain in a state of uniform motion and/or rest, and this is not necessarily bad.  Society needs structure and uniformity to function from the nuclear family all the way to level of government.

In terms of health, this is called homeostasis.  The human body requires a certain amount of sleep.  We require vital nutrients, daylight, human interaction, physical touch, exercise, and clean air and water in order to maintain homeostasis.  All of this is part of uniform motion.  When an outside force acts upon this homeostatic inertia, that usually means a stressor has occurred like a virus, toxin, physical injury, genetic mutation, car accident, or the like, and homeostasis has been disrupted.  We are no longer inert.

MJ

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4.  When you regulate your daily actions, you deactivate your ‘fight or flight’ instincts because you’re no longer confronting the unknown.

This is why people have such a difficult time with change, and why people who are constant in their habits experience so much joy: simply, their fear instincts are turned off long enough for them to actually enjoy something.

5.  As children, routine gives us a feeling of safety. As adults, it gives us a feeling of purpose.

Interestingly enough, those two feelings are more similar than you’d think (at least, their origin is the same). It’s the same thing as the fear of the unknown: as children, we don’t know which way is left, let alone why we’re alive or whether or not a particular activity we’ve never done before is going to be scary or harmful. When we’re adults engaging with routineness, we can comfort ourselves with the simple idea of “I know how to do this, I’ve done it before.”

Brianna Wiest

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[T]here is something very different about how autistics react to novel and familiar things.  There is something very different about their preference for, and reliance on, repetition and routines.  But it’s not that they’re rigid while everyone else is flexible.  Neurotypicals are so inflexible that they insist on their social rituals even when it would jeopardize others’ safety.

Neurotypicals misunderstand other people, and inadvertently treat each other badly all the time – often in more damaging ways than autistics do.  Neurotypicals can be more rigid than any autistic about the rituals that matter to them.

The difference is that autistics and neurotypicals misunderstand other people in different ways and are inflexible about different things.

Because autistics are in the minority and sometimes lack the ability to explain or advocate for themselves, their way of misunderstanding and being rigid has been pathologized, while neurotypicals’ has been ignored.

Emily Morson

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[…] can we talk a little bit more about how much of autism therapy is about the therapist being rigid and controlling?

Alyssa Hillary

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Autistic people don’t all have a convenient love of tedious tasks everyone else hates. Some of us have the audacity to want jobs others want.

Ruti Regan

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(Under ‘Leadership/Management’)

How many times have you heard that you need to get the big picture? Or that you feel like you didn’t have the big picture? I’ve heard this phrase repeated too many times to count and each time I do the thought that runs through my mind is this: what exactly is the big picture and how can I get big picture thinking?

The fact is that the big picture depends on your point of view. I don’t believe anyone can truly have the big picture (serious emphasis on ‘big’) because it’s not possible to see the infinite number of influence points involved. In fact, the bigger the project, program or issue the more difficult it is for anyone – even the leader at the top – to have the big picture.

Christian Knutson

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They are fully aware of their entire environment. We are talking about a multifocalized attention.

Whilst the attention of a neurotypical individual only focuses on one point at a time.

People with this multifocalized attention are hypersensitive and perceptual. Thus, they have the ability to perceive the overall picture of a situation including all of the details, even those that usually go unnoticed for the majority of people. Therefore, it is extremely difficult for them to perceive only one thing at a time and to concentrate on it, if there is no relevant interest in doing so. […] These people perceive the global nature of their environment in a very complex way. They are sensitive to ambient noise, light, people’s movements, etc. They see and feel everything, constantly.

Out of context, Mélanie Ouimet

(translated by Tanya Izquierdo Prindle)

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Consider which two of these objects go together: a panda, a monkey and a banana.  Respondents from Western countries routinely select the monkey and the panda, because both objects are animals. This is indicative of an analytic thinking style, in which objects are largely perceived independently from their context.

In contrast, participants from Eastern countries will often select the monkey and the banana, because these objects belong in the same environment and share a relationship (monkeys eat bananas). This is a holistic thinking style, in which object and context are perceived to be interrelated.

Nicolas Geeraert

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There is a set of powerful visual learning tools used in schools, universities and workplaces all over the world that can help us better organize our ideas. […] thinking maps are a rich resource when it comes to creative analytical thinking processes. They help us visualize even the most complex ideas and make them tangible.

Orana Velarde

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I’d like to ask if we’re really more vulnerable to everyday emotional and physiological challenges or if we’re tired because we’re dealing with more of them. While I ask, I’d like to see how many neurotypical people can function while walking on an untreated broken foot. I’d also like to ask how many neurotypical people who unexpectedly found themselves unable to speak 10 minutes before they were scheduled to present at a conference would still present. Not more vulnerable than y’all, just dealing with more nonsense.

I think saying we are unusually poorly equipped to deal with certain challenges (lower threshold) and have fewer innate coping strategies is a simplification at best and wrong in places. We wind up getting into trouble more, that’s definitely true, but how would you cope in an environment designed for how I work? It’s often about mismatches.

Also, we have plenty of coping strategies. Noping out of bad environments (avoiding them) is an effective strategy when we’re allowed to use it, but it often gets called eloping because for some reason y’all want us there anyways. Covering our ears is a semi-effective way to deal with loud. Those things that get taken as signs that we’re getting dysregulated […] are often actually ways that we stay regulated, and that realization could (but only partially did) lead to the conclusion that we’re not so much short on coping methods as disallowed from using them.

Alyssa Hillary

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[P]lenty of people make choices that others would find terribly limiting – not teaching their children multiple language, not having children at all, working in a career that is emotionally rewarding but not financially so, or the reverse, codes of dress or diet restrictions imposed by religious belief. What right, then, do we have to criticize someone’s preference for the comfort of repetitive activities?

Restless Hands

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Some people might be better at certain things, we even call some of those people ‘geniuses’. But their ‘intelligence’ is the product of a concept of the time and place they live in. It is possible that, in another time, in another place, their ‘intelligence’ would not be ‘superior’.

Amy Sequenzia

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Categories
Spectrum

Lines – Glass (Part 1)

Question:

Why do some neurotypicals stim? Do they realize they are stimming?

They do. I don’t think they know they do, but they do. […]

Watch people overcome with emotion, an emotion that they can’t process, and they will stim.

Watch the news after a disaster or some horrible accident and you will see people holding their heads and rocking back in forth in grief.

Watch game shows when someone wins a big prize and look at their hands. Fingers extended, flat palms and shaking very fast in excitement.

Once you key into it, it is hard to miss.

Ben Rodda

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Kids love repetitive stuff. I used to work as a teacher assistant with 1-4th grade. Trust me with younger kids, if they like a video, they’ll see it 200 times in a row without getting bored.

LadyNoir93

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I know many adults without disabilities that enjoy child-like things like cartoons or toys. People with Intellectual and developmental disabilities are treated differently for liking the same things. It’s funny when I meet with non disabled people and they geek out over my little plushy wookies I carry as comfort items. It shows me that adults can enjoy things that children enjoy without people assuming that they are mental children.

Ivanova Smith

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The sheer amount of people who look at me and view me as ‘unresponsive’ when I’m very responsive, is impressive. And the things they do when they view me as unresponsive, seem a lot more like unresponsiveness than anything I do to them.

It’s like they only see a tiny, tiny number of the possible human responses as ‘response’. When those responses are present, even if totally fake and out of context and plastered-on to someone who’s really not all that responsive to someone, they view it as ‘responsiveness’. When those responses are not present, even if every other possible signal of response is happening, they view that as ‘unresponsiveness’. And they call us oblivious?

Mel Baggs

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I definitely know that lots of non-ASD people are terrible at judging how people with ASD are feeling.

If you just noodle around the Internet for a minute, you will find quite a lot of ASD people describing how someone thought they were nervous or sad when they were calm, bored when they were having a panic attack, uninterested in things they were actually very interested in, and so on.

In fact, sometimes police officers will harass or physically hurt people with ASD because they misinterpreted the person’s behavior.

Amanda Forest Vivian

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Hacking emphasizes that the divide between autists and non-autists is ‘symmetric.’ He attributes this divide to the fact that autistic people cannot intuit non-autists’ feelings and intentions, and vice-versa. “We are fellow humans in that we grasp each other’s intentions, feelings, and wants,” he argues. Because autists and non-autists cannot immediately grasp each other’s interiority, they see each other as alien. They do not share the “bedrock” of a common humanity, nor do they “share a form of life,” Hacking claims, borrowing two turns of phrase from Wittgenstein.

Hacking does ultimately try to gesture toward inclusion, and I do think that is laudable. However, I disagree with many of the premises of his argument, and I wholeheartedly reject the idea that autists and non-autists must be fundamentally alien to each other.

Caroline Narby

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(Why repeat lyrics?)

Seven time seven is 49. The pearl is in the river. Mr. Turkey is two times good for you. How much wood would a woodchuck chuck? I believe Fielding Melish is a traitor to his country. Badadada. Badadada.

Along with many many other stock phrases, these are integral parts of my thought process. Sometimes I say them out loud around people I am comfortable with. Each one indicates a type of thought and keeps me anchored enough in language to figure out what it is I need to say.

I suspect that NTs do this somewhat with songs, though they don’t usually respect or recognize these other forms. […]

Bev

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when I am feeling very bad, usually I’ll latch onto some song extra hard.

Noelle Stevenson

Is she NT? I don’t know.  Should it matter? It’s up to you.

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[…] folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it’s an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?)

Alyssa Hillary

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Words are but the vague shadows of the volumes we mean. Little audible links, they are, chaining together great inaudible feelings and purposes.

Out of context, Theodore Dreiser

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Categories
Positions

Cure

Main argument: Severely disabled

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I don’t hate myself, I just wish there was a cure so I could function better […]

Jonathan Mitchell

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[Some people] would not want a full cure but would take half of one, perhaps lowering the impact of certain symptoms while maintaining the core traits.

Creigh, Caley

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“But if you took away my autism, I wouldn’t be me!” neurodiversity proponents cheer.

“Yes, you would, and no, you wouldn’t. And that’s all okay,” I counter. Every human on this planet […] ha[s] no inherent, independent, unchangeable, enduring selfhood as such.

Twilah Hiari

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[E]very time I see a post about anti-cure or use of “autistic” and the r-slur as insults, there are inevitably a few autistic people commenting that they would actually want a cure, or that they’re okay with people using “autistic” as an insult.

In a vacuum, these sentiments are fine. You’re entitled to your own opinion, and if you are autistic both these matters are of direct concern to you […]

But we’re not in a vacuum.

We are surrounded by ableists. […] if you present an opinion that aligns with their beliefs and goes directly against the held beliefs of the majority, they’re going to tokenize you. Because one autistic voice that agrees with them is enough to undermine the voices of literally everyone else. […]

I’m not saying you should never express that you want a cure or that you think using autism as an insult is okay. […] But you need to be very careful why and how you express these opinions, because ableists will use your voice as justification to hurt people […]

Anna

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When we stop talking about ‘curing autism’ and start talking about ‘relieving autistic suffering’, the research takes on a whole new direction. When we stop using the cognitive shortcut ‘autism’ and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors […] we may actually start having productive conversations about autism […]

VisualVox

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On the one hand, I read about how people need to find the positives in their conditions to help maintain self esteem and find a balance, and that makes sense.

On the other hand, I think that if we define the condition in terms of deficits, then the creativity and energy belong to the person, not the condition. And then, the reluctance to be free of the condition (assuming such a thing is possible) disappears.

Out of context, Sarah K Reece

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The truth is – if someone had offered me a ‘cure’ that would make me completely neurotypical in the first twenty three or so years of my life, I would have torn off their hand to get it.

That’s not an admission of defeat on the topic of neurodiversity, or a surrender to the idea that a ‘cure’ for autism is something that is wanted or needed. In fact, it’s one of the core reasons that I advocate so strongly against the very idea of finding a ‘cure’.

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These arguments [that support the choice of a cure] fail to address the fact that the issue here is not being autistic or being LGBTQIA+. The issue is ableism, homophobia, transphobia and all those ways that the world crushes down on you, repeating again and again that you are wrong, that you are defective, that the word was not built for you; a world that demands that you cut off your corners to fit through the hole, when the true answer was to widen the hole altogether.

Erin Ekins

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I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all – when I knew that, if I had a chance, I’d take a cure in a heartbeat.

I want the things a cure could give me. […]

Can you look at the list of things I want, and tell me if you see a pattern?

Every single one of those things I want?

Have nothing to do with being autistic.

In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.

What if being cured didn’t fix those things?

Julia Bascom

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We need to rally for mutual respect. We need to rally for diversity. We need to rally for healing. And yes, some of us choose to rally for cures and therapies and miracles. But I think that can be done in a way that isn’t going to hurt others. I think it can be done in a way that makes people look at us in awe and think, “Wow, now there is a group of people that can disagree without bullying one another.” […]

I choose not to say SUCK IT AUTISM on my blog anymore. I mean, I will say it sucks in my head every once in a while, because truth be told, it’s just how I feel sometimes; I don’t want to lie to you. It really is how I feel sometimes. Not every second, not every minute, not even every day. But I do think and feel it sometimes.

But I know now what that particular phrase is capable of and while it invigorated me when I used it the other day, it brought other people to tears when they heard it. And I’ll tell ya, nothing takes the wind out of my sails like realizing just how much damage something I write can cause. […]

Jo Ashline

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[…] And for that matter the whole cure topic gets oversimplified the same way.

While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did.

I have worked right alongside people who want cures (some of whom even did ‘biomed’), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on.

And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

Mel Baggs

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Basically, if there were to legitimately be no pressure to become neurotypical, if being autistic were actually OK, if it were a choice a person made for themself and only themself, with informed consent […] in that world? If it existed, and they chose it, I would shake their hands and wish them luck.

In the world we actually live in, I expect that the cure would be forcibly used on children, […] on anyone who receives services, and for any portions of the autistic community who technically were getting it only under informed consent, choosing not to would be used as a sign of incompetence, at which point it would be forced. That means any organization that states finding a cure as a mission is inherently not trusted.

Alyssa Hillary

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Unlike the porous and broad meaning of ‘disability’ – a word that has come to reflect the potential for community building and solidarity across difference in many disability communities – philosophical and medical framings of ‘severe disability’ presume undesirability, objective tragedy, and potentially a lack of personhood.

Sunaura Taylor

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