Firesongs (Echo)

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.

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.