ideas – Autism: Explorations

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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. […]

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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. […]

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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.

Truth Beacon – Advocacy

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“Shut up and listen to marginalized people” isn’t quite the right rule […] We need to do better by each other, and start listening for real.

Ruti Regan

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[…] The whole thing is set up in a way where the only way to move forward is to find something to oppose and devour. There is never a point where the way you do things is good enough. You have to find more and more words and ideas to oppose. Words and ideas that mark who is in the know, and who is bad. These things constantly change.
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Within this culture, you stop noticing your surroundings. Instead, you see a network of lines representing various power dynamics, bad words and ideas, good words and ideas, and the way this community responds to them. You stop being able to see that this is not the only way to respond to injustice.

Mel Baggs

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[It’s possible that one who] outwardly celebrates the diversity in labels, doesn’t necessarily celebrate the diversity of thought – not seeming to grasp that the two by necessity has to go together. A group of diverse people would take different routes to achieve a purpose. They would have different ideas on how to do it, when to do it.

potteresque-ire

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[…] Autonomy as a value of deliberative democracy is contested by non-disabled family members who advocate with their disabled family members in order to portray the interdependency of their interests. Charlie’s experience thus gives new meaning to the value of reciprocity in deliberative democratic theory, moving it away from mutual competence towards mutual dependence.

Stacy Clifford

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People everywhere, every day are trying to navigate {many} kinds of dilemmas, and {some of the time} are doing so in a culture that refuses to discuss {them}.

Partial quote, Sarah K Reece

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When new ideas emerge in society there is usually discussion about them. It’s a sound general principle – the best way to evaluate new ideas is to explore them critically and freely.
{Plenty of} issues […] are of importance to society as a whole. […] Surely we can agree that {people, especially the referred groups} should have the right to discuss it?

This must be done in an atmosphere of mutual respect in which anyone is free to critically discuss anything they wish, using whatever (respectful) terminology they choose.
The underlying issues, {redefinitions, and introduction of new concepts} must be seen for what they are: nobody’s exclusive property.

Partial quote, Jonathan Best

In the same series:

Truth Beacon – Research & Authority

Truth Beacon – Experiences