pyraxis: Pyraxis (Pyraxis)
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.

A life-size bronze sculpture of a nude young woman, holding an apple high in her right hand and gazing into it. Her left hand is behind her, palm out, as if to ward something off.

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.
pyraxis: Pyraxis (Pyraxis)
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.)

Vigil

Mar. 1st, 2014 11:06 pm
pyraxis: A dark stone entrance made by laying a slab of stone across two other boulders, in a forest near the hills (Teiranen)
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.
pyraxis: Pyraxis (Pyraxis)
The fine folk of the [personal profile] spacerobotcrew are holding the grand opening of their etsy store!

Spacerobot Studio business card image. www.spacerobotstudio.etsy.com - Celebrating Neurodiversity, Creativity and Alternative Communication. Status necklaces, Neurodiversity Pride jewelry, shrinky dinks, and more!

www.spacerobotstudio.etsy.com

Celebrating Neurodiversity, Creativity and Alternative Communication. Status necklaces, Neurodiversity Pride jewelry, shrinky dinks, and more!

You can also follow them on Twitter under SpacerobotStudio.

Check it out. The Spacerobot Crew have been developing and testing some of this stuff for years as an alternative communication method for themselves: signal cards on a necklace to say whether they're up for being approached and talking, and how much energy they have for people-interaction.

For autistic people or others who have difficulty getting the message across through words or body language, these tools are really helpful. Thanks to the Spacerobots, they're cool to look at as well.

They've also been developing a line of steampunk-inspired jewelry and neurodiversity pride pendants.
A mirror of Firesongs on LiveJournal

June 2017

S M T W T F S
    123
45678910
11121314151617
18192021222324
2526272829 30 

Syndicate

RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Oct. 21st, 2017 08:43 am
Powered by Dreamwidth Studios