Firesongs (Echo)

RIP Polly Samuel

2017-04-30T22:31:41Z

Also known as Donna Williams, the author of the Nobody Nowhere autobiography series, Exposure Anxiety: The Invisible Cage, many other books, and the music albums Nobody Nowhere (2000) and Mutation (2005). She was also a fine artist and performing artist and gave presentations on autism all over the world.

( She and her work had a massive impact on our life. )

( She answered the next day. )

~

In the dream home that j-t had designed in her head, there was a reproduction of Donna Williams' sculpture My World-'The World' at the end of the entry hall/art gallery.

I just discovered she's left an incredible array of entries in her blog about her thoughts preparing for death and how she would like to be remembered afterwards. I'm going to have to read through this slowly 'cause I know I'm going to end up crying a lot.

She writes, "I felt really strongly I didn’t want a funeral and when I learned I didn’t have to have one, or a grave or any of the trappings, it fitted me. ... I wanted those who loved me to remember and celebrate me in nature, where I belong and will endure in a spiritual place and to make a personal alter or plant a plant to commemorate me where they can commune with me within their own world, for I am a patchwork of all who loved me just as they are, so this is where I live, in life, and after leaving my body."

We're not in a place yet where we can do this. So instead I'm going to take a risk and set this entry to public, at least for now.

Edit: Removed the "Vale" from the post title, which I learned is actually a Latin honorific for the deceased, meaning "farewell", not a first name as I had thought.

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History of community

2014-06-18T03:35:46Z

I want to spread this long but incredibly important Tumblr post about the history of the autism and multiplicity communities everywhere I can.

We weren't a part of all of the groups and initiatives described there, but we know some of the people involved. Our place was on the forums, the rise and fall of various forums between 2004 and the present.

I want to talk about one thing. The importance of freedom of speech and an uncensored space in the development of a community. Everything Amorpha/S. says about the Dark Personalities mailing list has been mirrored in Daria's and my own experiences of the unmoderated autism forum we have been a part of. It is imperative to have a space for people who have been cast out of other communities for being too controversial, for saying critical things, for breaking social rules, for pissing off the wrong person. When there is social upheaval because huge new ideas have come to light, there is an urgent need for space where they can be spoken about freely, hashed out, argued about, screamed about. In the brouhaha over demanding trigger warnings that has even spread to mainstream media in the past year, I want people to understand why it is important to keep places where trigger warnings and other kinds of content policing are not required.

It's still difficult to write about this because I am an intensely private person and used to keeping up mental boundaries.

Thanks Kerry for the link on your journal. (This one.)

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Vigil

2014-03-02T04:37:37Z

The Day of Mourning was today for disabled people who were killed by the people who should have been caring for them.

The List is too long.

(Disturbing content, obviously, especially for people with caregivers.)

When a disabled person is killed like this, all too often there is an outpouring of sympathy for the killer. An assumption that the burden must have been too great, platitudes that the disabled person is in a better place now, the false judgment that their life was not worth living because of this or that arbitrary declaration of "quality of life".

Every one of these things forgets that the disabled person is a person, who deserves first and foremost the same mourning and the same justice as any other person.

Caretaker fatigue is real. But it is no excuse for murder. The tunnel-vision that people get when they are drained and exhausted, where they can't see alternate possibilities, must not end in destruction. The things that they tell themselves in order to get through the day, about their own necessity and how the disabled person could not continue to exist without them - they may be comforting in the moment but they lead to bad places when taken too far.

Parts of society are very rich, in money and in caring, in attention and communication and knowledge. Some of these resources need to be redirected so that those who are cared for do not end up in hidden vortexes where other people write them off as no longer fit to be alive.

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Lakota Sioux buy back Pe' Sla!

2012-12-02T02:27:24Z

It started with an IndieGoGo and turned into an international campaign.

Check the link for the about, it's a place in the Black Hills of South Dakota that was going to get auctioned for development, the link explains better than I can.

Full article here

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Signal boost

2012-08-18T01:24:33Z

What the hey, we don't have feelings anyway, right?

( Text of letter denying man heart transplant due to autism and psychiatric issues )

Latest update

Change.org petition

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Clearwater

2012-07-16T04:45:29Z

( Yeh but what is it? )

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Occupy the Judge Rotenberg Center

2012-04-16T01:20:20Z

Make this viral. From ksol1460.

The Judge Rotenberg Center is a place for autistic kids in Massachusetts, where parents put kids that they don't know how to deal with. The kids have to wear shock devices 24-7 and anytime the staff doesn't like their behavior, they get shocked. There's restraint and seclusion and food deprivation, there's stuff that is illegal when it's done to prisoners of war but cause these kids are mentally disabled people think it's ok.

This is the Stanford Prison Experiment happening in real life, every day, and nobody's yet been able to shut it down, because the lawyers and manipulators are too good at doing what they do.

The video in the first link just got released last Tuesday, April 10. It's been sealed by the courts for eight years because bureaucrats know how to work the system to suppress truth. It's of Andre McCollins, when he was 18, being strapped down and repeatedly shocked.

I haven't watched it.

But it needs to spread.

Anonymous is targeting the JRC. There is a National Day of Action on June 2 where people are going to the JRC to peacefully protest. There are links to petitions and contact information for government representatives here. Anyone who doesn't live close enough to go protest, the next thing to do is spread the word online.

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Witnessed.

2012-02-26T22:16:50Z

( Thoughts about how to be there and mean it. Thanks to Wolf. )

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Reposting

2011-09-26T10:15:36Z

Because it's important.

What it means to be real (Ballastexistenz)

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